Form990


Department of the TreasuryInternal Revenue Service
Return of Organization Exempt From Income Tax
Under section 501(c), 527, or 4947(a)(1) of the Internal Revenue Code (except private foundations)
Do not enter social security numbers on this form as it may be made public.
Go to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
2024
Open to Public Inspection
A For the 2024 calendar year, or tax year beginning 01-01-2024 , and ending 12-31-2024
BCheck if applicable:
CName of organization
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE
 
 
Doing business as
 
 
Number and street (or P.O. box if mail is not delivered to street address)
PO BOX 1537
 
Room/suite
City or town, state or province, country, and ZIP or foreign postal code
SPRINGFIELD, VA22151
D Employer identification number

52-2122720
E Telephone number

G Gross receipts $ 14,956,926
F Name and address of principal officer:
JENNIFER FARMER
533 W UWCHLAN AVENUE
DOWNINGTOWN,PA19335
I
Tax-exempt status: (   ) (insert no.) or
J
Website:
WWW.CUREFA.ORG
H(a)
Is this a group return for
subordinates?
H(b)
Are all subordinates
included?
If "No," attach a list. See instructions.
H(c)
Group exemption number  
K Form of organization:  
L Year of formation: 1998
M State of legal domicile: VA
Part I
Summary
Activities & Governance 1 Briefly describe the organization’s mission or most significant activities: TO TREAT AND CURE FRIEDREICH'S ATAXIA (FA) BY ADVANCING RESEARCH, AWARENESS AND PARTNERSHIPS.
2 Check this box
3 Number of voting members of the governing body (Part VI, line 1a) ........ 3 19
4 Number of independent voting members of the governing body (Part VI, line 1b) ..... 4 17
5 Total number of individuals employed in calendar year 2024 (Part V, line 2a) ...... 5 19
6 Total number of volunteers (estimate if necessary) ............. 6 500
7a Total unrelated business revenue from Part VIII, column (C), line 12 ........ 7a 0
b Net unrelated business taxable income from Form 990-T, Part I, line 11 ......... 7b 0
Revenues Prior Year Current Year
8 Contributions and grants (Part VIII, line 1h) ......... 12,011,078 13,517,065
9 Program service revenue (Part VIII, line 2g) ......... 0 0
10 Investment income (Part VIII, column (A), lines 3, 4, and 7d ) .... 35,631 172,331
11 Other revenue (Part VIII, column (A), lines 5, 6d, 8c, 9c, 10c, and 11e) -843,666 -553,970
12 Total revenue—add lines 8 through 11 (must equal Part VIII, column (A), line 12) 11,203,043 13,135,426
Expenses; 13 Grants and similar amounts paid (Part IX, column (A), lines 1–3 )... 9,307,077 10,467,810
14 Benefits paid to or for members (Part IX, column (A), line 4)..... 0 0
15 Salaries, other compensation, employee benefits (Part IX, column (A), lines 5–10) 1,461,477 1,572,657
16a Professional fundraising fees (Part IX, column (A), line 11e) ..... 0 0
b Total fundraising expenses (Part IX, column (D), line 25) 368,460    
17 Other expenses (Part IX, column (A), lines 11a–11d, 11f–24e).... 1,432,219 1,236,769
18 Total expenses. Add lines 13–17 (must equal Part IX, column (A), line 25) 12,200,773 13,277,236
19 Revenue less expenses. Subtract line 18 from line 12....... -997,730 -141,810
Net Assets or Fund Balances; Beginning of Current Year End of Year
20 Total assets (Part X, line 16)............. 7,752,276 6,946,549
21 Total liabilities (Part X, line 26)............. 1,605,648 676,182
22 Net assets or fund balances. Subtract line 21 from line 20..... 6,146,628 6,270,367
Part II
Signature Block
Under penalties of perjury, I declare that I have examined this return, including accompanying schedules and statements, and to the best of my knowledge and belief, it is true, correct, and complete. Declaration of preparer (other than officer) is based on all information of which preparer has any knowledge.
Sign Here
Signature of officer Date
Type or print name and title
Paid Preparer Use Only
Print/Type preparer's name
Preparer's signature
Date
PTIN
Firm's name

Firm's EIN
Firm's address



Phone no.
May the IRS discuss this return with the preparer shown above? See Instructions. ..........
For Paperwork Reduction Act Notice, see the separate instructions.
Cat. No. 11282Y Form 990 (2024)
Form 990 (2024)
Page 2
Part III
Statement of Program Service Accomplishments
Check if Schedule O contains a response or note to any line in this Part III..............
1
Briefly describe the organization’s mission: TO MARSHAL AND FOCUS THE RESOURCES AND RELATIONSHIPS NEEDED TO CURE FA BY RAISING FUNDS FOR RESEARCH, PROMOTING PUBLIC AWARENESS AND ALIGNING SCIENTISTS, PATIENTS, CLINICIANS, GOVERNMENT AGENCIES AND PHARMACEUTICAL COMPANIES DEDICATED TO CURING FA AND RELATED DISORDERS.
2
Did the organization undertake any significant program services during the year which were not listed on
the prior Form 990 or 990-EZ? .....................
If "Yes," describe these new services on Schedule O.
3
Did the organization cease conducting, or make significant changes in how it conducts, any program
services? ...........................
If "Yes," describe these changes on Schedule O.
4
Describe the organization’s program service accomplishments for each of its three largest program services, as measured by expenses. Section 501(c)(3) and 501(c)(4) organizations are required to report the amount of grants and allocations to others, the total expenses, and revenue, if any, for each program service reported.
4a (Code:   ) (Expenses $ 10,330,478 including grants of $ 9,606,747 ) (Revenue $   )
RESEARCH AND GRANT PROGRAM - SEE SCHEDULE O
4b (Code:   ) (Expenses $ 1,354,745 including grants of $ 781,063 ) (Revenue $   )
CLINICAL RESEARCH INFRASTRUCTUREIN ADDITION TO RESEARCH GRANTS, FARA FUNDS THE ONGOING DEVELOPMENT OF DOMAIN RESOURCES IN THE FORM OF VITAL CLINICAL RESEARCH INFRASTRUCTURE. CLINICAL RESEARCH INFRASTRUCTURE REFERS TO THE RESOURCES NEEDED TO FACILITATE ANY TYPE OF RESEARCH, INCLUDING CLINICAL TRIALS THAT INVOLVE PATIENTS. THESE RESOURCES INCLUDE PROGRAMS LIKE: FRIEDREICH'S ATAXIA GLOBAL PATIENT REGISTRY: THE FRIEDREICH'S ATAXIA GLOBAL PATIENT REGISTRY (FAGPR) IS THE ONLY WORLDWIDE REGISTRY OF FRIEDREICH'S ATAXIA PATIENTS. THE GOALS OF THE FAGPR ARE TO COLLECT INFORMATION ON ALL FA PATIENTS IN ONE REGISTRY, TO DEVELOP THE REGISTRY INTO A POWERFUL RESOURCE FOR RESEARCH, AND TO ENGAGE THE FA COMMUNITY IN STUDIES AIMED AT ADVANCING OUR KNOWLEDGE (CONTINUED IN SCHEDULE O)CLINICAL RESEARCH INFRASTRUCTURE (CONT'D):OF FA AND THE TREATMENTS BEING DEVELOPED. FARA PARTNERS WITH INTERNATIONAL PATIENT ADVOCACY ORGANIZATIONS THROUGH A GOVERNANCE BOARD TO ENSURE MULTI-STAKEHOLDER ENGAGEMENT AND OVERSIGHT OF THE FAGPR. MORE THAN 1000 INDIVIDUALS WITH FA ARE ENROLLED AND FAGPR WAS USED TO RECRUIT FOR SEVERAL CLINICAL TRIALS AND MANY CLINICAL RESEARCH STUDIES. TO LEARN MORE, VISIT CUREFA.NET/REGISTRY. FA GLOBAL CLINICAL CONSORTIUM: FARA AND THE FA COMMUNITY'S DEDICATION TO COLLECTING NATURAL HISTORY STUDY DATA OVER THE PAST TWO DECADES PROVED INSTRUMENTAL IN THE APPROVAL OF THE FIRST-EVER TREATMENT FOR FA. THROUGH THE FA GLOBAL CLINICAL CONSORTIUM (FA GCC), FARA HAS REDOUBLED ITS INVESTMENT IN NATURAL HISTORY DATA BY ENABLING THE TRANSITION TO AN INDUSTRY-LEADING DATA COLLECTION PLATFORM AND A UNIFIED GLOBAL NATURAL HISTORY PROTOCOL (UNIFAI) RESULTING FROM THE HARMONIZATION OF TWO WELL-ESTABLISHED NATURAL HISTORY STUDIES, THE FA CLINICAL OUTCOME MEASURES STUDY (FA-COMS) AND THE EUROPEAN FRIEDREICH'S ATAXIA CONSORTIUM FOR TRANSLATIONAL STUDIES (EFACTS). THE FA GCC AND THE UNIFAI STUDY HAVE BEEN EXPANDED TO MAKE PATIENT CONTRIBUTIONS TO NATURAL HISTORY EVEN MORE POWERFUL IN UNDERSTANDING FA, EVALUATING THE IMPACT OF TREATMENT OPTIONS FOR FA, ACCELERATING THE DEVELOPMENT OF NEW THERAPIES AND IMPROVING OUTCOMES FOR THOSE LIVING WITH FA. AT EACH UNIFAI STUDY VISIT THERE ARE MORE THAN 1400 DATA ELEMENTS RECORDED. OVER THE LAST TWO YEARS, THE FA GCC HAD ACTIVE PARTICIPATION FROM 54 INVESTIGATORS FROM 33 SITES REPRESENTING 18 COUNTRIES ALONG WITH REPRESENTATIVES FROM PATIENT ADVOCACY AND RESEARCH ORGANIZATIONS. FA GCC RESEARCH ACTIVITIES: THE FA GCC LEADERSHIP IDENTIFIED INITIAL SCIENTIFIC PRIORITIES AND CREATED WORKGROUPS TO ADDRESS THESE PRIORITIES. THE FOLLOWING WORK GROUPS, EACH MADE UP OF 5-10 CONSORTIUM MEMBERS, MET REGULARLY TO ADDRESS GAPS IN CURRENT FA RESEARCH: CARDIAC NATURAL HISTORY, LATE-STAGE SYMPTOMS, PEDIATRIC / PRESYMPTOMATIC, BIO-SAMPLES, MOOD AND COGNITION, AND PATIENT ADVOCACY/ADVISORY TEAM. QUARTERLY FULL GROUP MEETINGS SERVE AS A PLATFORM FOR INVESTIGATORS TO ESTABLISH COMMON RESEARCH INTERESTS, FORM COLLABORATIONS, AND SHARE THEIR GLOBAL EXPERIENCES WITH OMAVELOXOLONE. IMPACT AND FUTURE DIRECTION: THE CONSORTIUM HAS A LONG-TERM OBJECTIVE OF FOSTERING MULTILATERAL RESEARCH AND COLLABORATION ACROSS CONTINENTS, UNIFYING GLOBAL OPINIONS TO REGULATORS AND INDUSTRY PARTNERS, ACCELERATING THE DEVELOPMENT OF NEW THERAPIES, AND IMPROVING OUTCOMES FOR THOSE LIVING WITH FA. ADDITIONAL INFORMATION ABOUT FARA'S PROGRAMS IN 2024 CAN BE ACCESSED VIA THE ANNUAL REPORT AT: CUREFA.ORG
4c (Code:   ) (Expenses $ 491,179 including grants of $ 80,000 ) (Revenue $   )
AWARENESS, EDUCATION, AND OUTREACH PROGRAMS:AWARENESS: FRIEDREICH ATAXIA (FA) IS A RARE DISEASE; AFFECTING 1 IN 50,000 INDIVIDUALS. FARA IS DEDICATED TO ADVOCACY AND RAISING AWARENESS FOR FA. FARA HAS UTILIZED BOTH TRADITIONAL AND SOCIAL MEDIA STRATEGIES TO BRING GREATER AWARENESS TO FA IN THE GENERAL PUBLIC AND TO ENGAGE AND EDUCATE THE FA COMMUNITY. FOR EXAMPLE, FARA CONDUCTS AN ANNUAL A SOCIAL MEDIA CAMPAIGN THAT ENCOURAGES COMMUNITY PARTICIPATION LEADING UP TO FA AWARENESS DAY. ADVOCACY: FARA AND THE NATIONAL ATAXIA FOUNDATION (NAF) PARTNERED ON SEVERAL ADVOCACY INITIATIVES RELEVANT TO THE ATAXIA COMMUNITY. MOSTLY NOTABLY, THE EFFORTS OF THE TWO ORGANIZATIONS RESULTED IN THE CONTINUED INCLUSION OF HEREDITARY ATAXIA AS PART OF (CONTINUED IN SCHEDULE O)ADVOCACY: (CONT'D)THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP) AT THE DEPARTMENT OF DEFENSE IN FISCAL YEAR (FY) 24, RESULTING IN FOUR HEREDITARY ATAXIA RESEARCH GRANTS BEING RECOMMENDED FOR FUNDING TOTALING OVER $12 MILLION. FARA AND NAF WERE ALSO SUCCESSFUL IN GETTING A RESOLUTION PASSED DECLARING SEPTEMBER 25, 2024 NATIONAL ATAXIA AWARENESS DAY AND HOSTING THE SIXTH UNITED AGAINST ATAXIA HILL DAY- WITH 94 CONGRESSIONAL MEETINGS FEATURING THE PARTICIPATION OF 113 FARA AND NAF ADVOCATES FROM 32 STATES. EDUCATION: IN AN ONGOING EFFORT TO SHARE INFORMATION AND EDUCATION, FARA LAUNCHED A NEW WEBSITE IN 2024. THE SITE REDESIGN PRIORITIZED THE USER EXPERIENCE FOR KEY STAKEHOLDERS INCLUDING PATIENT FAMILIES, RESEARCHERS, AND DONORS. THE NEW SITE COINTAINS UP-TO-DATE INFORMATION ON FA RESEARCH INCLUDING GRANTS FUNDED BY FARA, TREATMENT APPROACHES AND PROGRAMS IN THE DRUG DEVELOPMENT PIPELINE, RESEARCH RESOURCES, AND CLINICAL TRIAL OPPORTUNITIES. IT ALSO OFFERS GUIDANCE FOR FAMILIES NAVIGATING FA AND OPPORTUNITIES TO CONNECT WITH OTHERS AND GET INVOLVED.ENGAGING WITH STAKEHOLDERS: AS EXPERTS IN LIVING WITH FA, INDIVIDUALS AND FAMILIES SHARED THEIR STORIES IN MANY FORUMS AND TO MANY AUDIENCES. IN 2024, OVER 50 INDIVIDUALS FROM THE FA COMMUNITY WORKED WITH FARA TO ENGAGE WITH PHARMACEUTICAL PARTNERS, RESEARCHERS, FUTURE HEALTHCARE PROFESSIONALS, MEDICAID COMMITTEES, AND THE FOOD AND DRUG ADMINISTRATION AT 33 DIFFERENT EVENTS. THEIR VOICES PROVIDE ESSENTIAL INSIGHTS THAT ADVANCE MEANINGFUL AND ACCESSIBLE TREATMENTS. CULTIVATING COMMUNITY: THROUGHOUT 2024, FARA WORKED TO STRENGTHEN THE FA COMMUNITY BY FACILITATING OPPORTUNITIES FOR CONNECTION AND COLLABORATION THROUGH VIRTUAL AND IN-PERSON EVENTS. INDIVIDUALS NEW TO THE FA COMMUNITY HAD THE OPPORTUNITY TO MEET OTHER FA FAMILIES FOR THE FIRST TIME. THE FARA AMBASSADOR PROGRAM, A GROUP OF ADULTS WITH FA WHO VOLUNTEER TO SUPPORT FARA'S MISSION, GREW TO 100 MEMBERS FROM COUNTRIES AROUND THE WORLD. AMBASSADORS NOW REPRESENT 14 COUNTRIES GLOBALLY PLUS 32 STATES THROUGHOUT THE US.TO HELP FURTHER FARA'S AWARENESS AND OUTREACH INITIATIVES, FARA ALSO FUNDED A GRANT FOR THE CREATION OF A DOCUMENTARY FILM ABOUT HOW THE FA COMMUNITY UNITES TO ADVANCE RESEARCH. THE FILM, UNDER THE WORKING TILE "THE HIGHEST ROAD," FOCUSES ON THE FA COMMUNITY'S ROLE IN HELPING TO GET THE FIRST DRUG APPROVED FOR FA A STORY THAT IS TOLD IN PARALLEL WITH COMMUNITY MEMBERS ATTEMPTING TO CYCLE UP THE HIGHEST PAVED ROAD IN INDIA. THE FILM IS CURRENTLY IS POST PRODUCTION WITH THE AIM TO BE SHOWN IN FILM FESTIVALS IN 2026.
(Code:   ) (Expenses $ 357,617 including grants of $   ) (Revenue $   )
WORKSHOPS, SYMPOSIA, & CONFERENCESINTERNATIONAL CONGRESS FOR ATAXIA RESEARCHIN NOVEMBER 2024, THE INTERNATIONAL CONGRESS FOR ATAXIA RESEARCH (ICAR) BROUGHT TOGETHER OVER 600 RESEARCHERS FROM AROUND THE WORLD. IT WAS THE LARGEST ICAR TO DATE AND A POWERFUL EXAMPLE OF HOW WE ACCELERATE PROGRESS WHEN EXPERTS ACROSS DIFFERENT TYPES OF ATAXIA COME TOGETHER TO SHARE IDEAS AND COLLABORATE. FARA WAS HONORED TO CO-HOST THE MEETING ALONG WITH ATAXIA UK, NATIONAL ATAXIA FOUNDATION, AND THE ATAXIA GLOBAL INITIATIVE.THIS YEAR'S PROGRAM INCLUDED A MIX OF PLENARY SESSIONS, BREAKOUT WORKSHOPS, AND SCIENTIFIC DEBATE. THE DEBATE SPARKED THOUGHTFUL DISCUSSION ABOUT THE STRENGTHS OF IN VIVO VS. IN VITRO RESEARCH MODELS AND HIGHLIGHTED HOW BOTH APPROACHES HELP TO MOVE THE SCIENCE FORWARD.SOME INSIGHTS AND LEARNINGS FROM ICAR 2024 INCLUDED: 1. DISCOVERING THAT FRATAXIN ACTIVITY CAN BE BOOSTED BY TARGETING OTHER COMPONENTS OF THE IRON-SULFUR CLUSTER ASSEMBLY REVEALS A POTENTIAL NEW TREATMENT PATHWAY. 2. SOME GAA REPEAT INTERRUPTIONS ARE MORE COMMON THAN PREVIOUSLY KNOWN, IMPACTING CARRIER DETECTION AND OPENING NEW THERAPEUTIC OPPORTUNITIES. 3. INFLAMMATION MIGHT CONTRIBUTE TO NERVE DAMAGE IN FA. 4.CAPSID FOR AN IV GENE ADDITION THERAPY REACHED KEY BRAIN AND HEART AREAS IN ANIMAL MODELS 5. MULTIPLE THERAPIES ACROSS DIFFERENT MECHANISMS OF ACTION ARE SHOWING EARLY PROMISE.FARA ALSO HOSTED FIVE RESEARCH RECEPTIONS AND SYMPOSIUMS TO SHARE INFORMATION ABOUT THE FA DRUG DEVELOPMENT PIPELINE, ONGOING CLINICAL TRIALS, CLINICAL MANAGEMENT, AND FARA RESOURCES. VIRTUAL EDUCATION SESSIONS INCLUDED FLASH TALKS WITH FARA-FUNDED RESEARCHERS, COMMUNITY CONVERSATION WEBINARS WITH FARA LEADERSHIP, AND INFORMATION SESSIONS WITH PHARMACEUTICAL PARTNERS.
4d Other program services (Describe in Schedule O.)
(Expenses $ 357,617 including grants of $   ) (Revenue $   )
4e Total program service expenses12,534,019
Form 990 (2024)
Form 990 (2024)
Page 3
Part IV
Checklist of Required Schedules
Yes
No
1
Is the organization described in section 501(c)(3) or 4947(a)(1) (other than a private foundation)? If "Yes," complete Schedule AClick to see attachment
List of Attached Documents:
// Content
.....................
1
Yes
 
2
Is the organization required to complete Schedule B, Schedule of Contributors? See instructions. Click to see attachment
List of Attached Documents:
// Content
...
2
Yes
 
3
Did the organization engage in direct or indirect political campaign activities on behalf of or in opposition to candidates for public office? If "Yes," complete Schedule C, Part IClick to see attachment
List of Attached Documents:
// Content
.............
3
 
No
4
Section 501(c)(3) organizations. Did the organization engage in lobbying activities, or have a section 501(h) election in effect during the tax year? If "Yes," complete Schedule C, Part IIClick to see attachment
List of Attached Documents:
// Content
.........
4
Yes
 
5
Is the organization a section 501(c)(4), 501(c)(5), or 501(c)(6) organization that receives membership dues, assessments, or similar amounts as defined in Rev. Proc. 98-19? If "Yes," complete Schedule C, Part IIIClick to see attachment
List of Attached Documents:
// Content
..
5
 
No
6
Did the organization maintain any donor advised funds or any similar funds or accounts for which donors have the right to provide advice on the distribution or investment of amounts in such funds or accounts? If "Yes," complete Schedule D, Part IClick to see attachment
List of Attached Documents:
// Content
.........................
6
 
No
7
Did the organization receive or hold a conservation easement, including easements to preserve open space,
the environment, historic land areas, or historic structures? If "Yes," complete Schedule D, Part IIClick to see attachment
List of Attached Documents:
// Content
....
7
 
No
8
Did the organization maintain collections of works of art, historical treasures, or other similar assets? If "Yes,"
complete Schedule D, Part IIIClick to see attachment
List of Attached Documents:
// Content
..............
8
 
No
9
Did the organization report an amount in Part X, line 21 for escrow or custodial account liability; serve as a custodian for amounts not listed in Part X; or provide credit counseling, debt management, credit repair, or debt negotiation services? If "Yes," complete Schedule D, Part IVClick to see attachment
List of Attached Documents:
// Content
..............
9
 
No
10
Did the organization, directly or through a related organization, hold assets in temporarily restricted endowments, permanent endowments, or quasi endowments? If "Yes," complete Schedule D, Part V......
10
 
No
11
If the organization’s answer to any of the following questions is "Yes," then complete Schedule D, Parts VI, VII, VIII, IX, or X, as applicable.
a
Did the organization report an amount for land, buildings, and equipment in Part X, line 10? If "Yes," complete
Schedule D, Part VI. Click to see attachment
List of Attached Documents:
// Content
...................
11a
 
No
b
Did the organization report an amount for investments—other securities in Part X, line 12 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part VIIClick to see attachment
List of Attached Documents:
// Content
.......
11b
Yes
 
c
Did the organization report an amount for investments—program related in Part X, line 13 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part VIIIClick to see attachment
List of Attached Documents:
// Content
.......
11c
 
No
d
Did the organization report an amount for other assets in Part X, line 15 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part IXClick to see attachment
List of Attached Documents:
// Content
............
11d
 
No
e
Did the organization report an amount for other liabilities in Part X, line 25? If "Yes," complete Schedule D, Part XClick to see attachment
List of Attached Documents:
// Content
11e
Yes
 
f
Did the organization’s separate or consolidated financial statements for the tax year include a footnote that addresses the organization’s liability for uncertain tax positions under FIN 48 (ASC 740)? If "Yes," complete Schedule D, Part XClick to see attachment
List of Attached Documents:
// Content
11f
Yes
 
12a
Did the organization obtain separate, independent audited financial statements for the tax year? If "Yes," complete
Schedule D, Parts XI and XIIClick to see attachment
List of Attached Documents:
// Content
......................
12a
 
No
b
Was the organization included in consolidated, independent audited financial statements for the tax year? If "Yes," and if the organization answered "No" to line 12a, then completing Schedule D, Parts XI and XII is optional Click to see attachment
List of Attached Documents:
// Content
12b
Yes
 
13
Is the organization a school described in section 170(b)(1)(A)(ii)? If "Yes," complete Schedule E
13
 
No
14a
Did the organization maintain an office, employees, or agents outside of the United States? .....
14a
Yes
 
b
Did the organization have aggregate revenues or expenses of more than $10,000 from grantmaking, fundraising, business, investment, and program service activities outside the United States, or aggregate foreign investments valued at $100,000 or more? If "Yes," complete Schedule F, Parts I and IV.........Click to see attachment
List of Attached Documents:
// Content
14b
Yes
 
15
Did the organization report on Part IX, column (A), line 3, more than $5,000 of grants or other assistance to or for any foreign organization? If “Yes,” complete Schedule F, Parts II and IV.....Click to see attachment
List of Attached Documents:
// Content
15
Yes
 
16
Did the organization report on Part IX, column (A), line 3, more than $5,000 of aggregate grants or other assistance to or for foreign individuals? If “Yes,” complete Schedule F, Parts III and IV...Click to see attachment
List of Attached Documents:
// Content
16
Yes
 
17
Did the organization report a total of more than $15,000 of expenses for professional fundraising services on Part IX, column (A), lines 6 and 11e? If "Yes," complete Schedule G, Part I. See instructions. ....Click to see attachment
List of Attached Documents:
// Content
17
 
No
18
Did the organization report more than $15,000 total of fundraising event gross income and contributions on Part VIII, lines 1c and 8a? If "Yes," complete Schedule G, Part II............ Click to see attachment
List of Attached Documents:
// Content
18
Yes
 
19
Did the organization report more than $15,000 of gross income from gaming activities on Part VIII, line 9a? If "Yes," complete Schedule G, Part III...................Click to see attachment
List of Attached Documents:
// Content
19
 
No
20a
Did the organization operate one or more hospital facilities? If "Yes," complete Schedule H....
20a
 
No
b
If "Yes" to line 20a, did the organization attach a copy of its audited financial statements to this return?
20b
 
 
21
Did the organization report more than $5,000 of grants or other assistance to any domestic organization or domestic government on Part IX, column (A), line 1? If “Yes,” complete Schedule I, Parts I and II.....Click to see attachment
List of Attached Documents:
// Content
21
Yes
 
Form 990 (2024)
Form 990 (2024)
Page 4
Part IV
Checklist of Required Schedules (continued)
Yes
No
22
Did the organization report more than $5,000 of grants or other assistance to or for domestic individuals on Part IX, column (A), line 2? If “Yes,” complete Schedule I, Parts I and III........Click to see attachment
List of Attached Documents:
// Content
22
Yes
 
23
Did the organization answer "Yes" to Part VII, Section A, line 3, 4, or 5, about compensation of the organization’s current and former officers, directors, trustees, key employees, and highest compensated employees? If "Yes," complete Schedule J....................... Click to see attachment
List of Attached Documents:
// Content
23
Yes
 
24a
Did the organization have a tax-exempt bond issue with an outstanding principal amount of more than $100,000 as of the last day of the year, that was issued after December 31, 2002? If “Yes,” answer lines 24b through 24d and complete Schedule K. If “No,” go to line 25a...............
24a
 
No
b
Did the organization invest any proceeds of tax-exempt bonds beyond a temporary period exception?...
24b
 
 
c
Did the organization maintain an escrow account other than a refunding escrow at any time during the year
to defease any tax-exempt bonds? ...............
24c
 
 
d
Did the organization act as an "on behalf of" issuer for bonds outstanding at any time during the year?...
24d
 
 
25a
Section 501(c)(3), 501(c)(4), and 501(c)(29) organizations. Did the organization engage in an excess benefit transaction with a disqualified person during the year? If "Yes," complete Schedule L, Part I ....
25a
 
No
b
Is the organization aware that it engaged in an excess benefit transaction with a disqualified person in a prior year, and that the transaction has not been reported on any of the organization’s prior Forms 990 or 990-EZ? If "Yes," complete Schedule L, Part I.......................
25b
 
No
26
Did the organization report any amount on Part X, line 5 or 22 for receivables from or payables to any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or 35% controlled entity or family member of any of these persons? If "Yes," complete Schedule L, Part II...........
26
 
No
27
Did the organization provide a grant or other assistance to any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or employee thereof, a grant selection committee member, or to a 35% controlled entity (including an employee thereof) or family member of any of these persons?
If "Yes," complete
Schedule L, Part III.........................
27
 
No
28
Was the organization a party to a business transaction with one of the following parties (see the Schedule L, Part IV instructions for applicable filing thresholds, conditions, and exceptions):
a
A current or former officer, director, trustee, key employee, creator or founder, or substantial contributor? If "Yes," complete Schedule L, Part IV......................
28a
 
No
b
A family member of any individual described in line 28a? If "Yes," complete Schedule L, Part IV.....
28b
 
No
c
A 35% controlled entity of one or more individuals and/or organizations described in line 28a or 28b? If "Yes," complete Schedule L, Part IV.....................
28c
 
No
29
Did the organization receive more than $25,000 in non-cash contributions? If "Yes," complete Schedule M..Click to see attachment
List of Attached Documents:
// Content
29
Yes
 
30
Did the organization receive contributions of art, historical treasures, or other similar assets, or qualified conservation contributions? If "Yes," complete Schedule M .................Click to see attachment
List of Attached Documents:
// Content
30
 
No
31
Did the organization liquidate, terminate, or dissolve and cease operations? If "Yes," complete Schedule N, Part I
31
 
No
32
Did the organization sell, exchange, dispose of, or transfer more than 25% of its net assets? If "Yes," complete Schedule N, Part II........................
32
 
No
33
Did the organization own 100% of an entity disregarded as separate from the organization under Regulations sections 301.7701-2 and 301.7701-3? If "Yes," complete Schedule R, Part I............Click to see attachment
List of Attached Documents:
// Content
33
 
No
34
Was the organization related to any tax-exempt or taxable entity? If "Yes," complete Schedule R, Part II, III, or IV, and Part V, line 1.........................Click to see attachment
List of Attached Documents:
// Content
34
Yes
 
35a
Did the organization have a controlled entity within the meaning of section 512(b)(13)?
35a
 
No
b
If ‘Yes’ to line 35a, did the organization receive any payment from or engage in any transaction with a controlled entity within the meaning of section 512(b)(13)? If "Yes," complete Schedule R, Part V, line 2 ...
35b
 
 
36
Section 501(c)(3) organizations. Did the organization make any transfers to an exempt non-charitable related organization? If "Yes," complete Schedule R, Part V, line 2............. Click to see attachment
List of Attached Documents:
// Content
36
 
No
37
Did the organization conduct more than 5% of its activities through an entity that is not a related organization and that is treated as a partnership for federal income tax purposes? If "Yes," complete Schedule R, Part VIClick to see attachment
List of Attached Documents:
// Content
37
 
No
38
Did the organization complete Schedule O and provide explanations on Schedule O for Part VI, lines 11b and 19? Note. All Form 990 filers are required to complete Schedule O. ............
38
Yes
 
Part V
Statements Regarding Other IRS Filings and Tax Compliance
Check if Schedule O contains a response or note to any line in this Part V...........
Yes
No
1a
Enter the number reported in box 3 of Form 1096. Enter -0- if not applicable ..
1a
19
b
Enter the number of Forms W-2G included on line 1a. Enter -0- if not applicable .
1b
0
c
Did the organization comply with backup withholding rules for reportable payments to vendors and reportable gaming (gambling) winnings to prize winners? ..................
1c
Yes
 
Form 990 (2024)
Form 990 (2024)
Page 5
Part V
Statements Regarding Other IRS Filings and Tax Compliance (continued)
2a
Enter the number of employees reported on Form W-3, Transmittal of Wage and
Tax Statements, filed for the calendar year ending with or within the year covered by this return ..................
2a
19
b
If at least one is reported on line 2a, did the organization file all required federal employment tax returns?
2b
Yes
 
3a
Did the organization have unrelated business gross income of $1,000 or more during the year?...
3a
 
No
b
If “Yes,” has it filed a Form 990-T for this year? If “No” to line 3b, provide an explanation in Schedule O...
3b
 
 
4a
At any time during the calendar year, did the organization have an interest in, or a signature or other authority over, a financial account in a foreign country (such as a bank account, securities account, or other financial account)? ..
4a
 
No
b
If "Yes," enter the name of the foreign country:
See instructions for filing requirements for FinCEN Form 114, Report of Foreign Bank and Financial Accounts (FBAR).
5a
Was the organization a party to a prohibited tax shelter transaction at any time during the tax year? ..
5a
 
No
b
Did any taxable party notify the organization that it was or is a party to a prohibited tax shelter transaction?
5b
 
No
c
If "Yes," to line 5a or 5b, did the organization file Form 8886-T? ............
5c
 
 
6a
Does the organization have annual gross receipts that are normally greater than $100,000, and did the organization solicit any contributions that were not tax deductible as charitable contributions? ...
6a
 
No
b
If "Yes," did the organization include with every solicitation an express statement that such contributions or gifts were not tax deductible? ......................
6b
 
 
7
Organizations that may receive deductible contributions under section 170(c).
a
Did the organization receive a payment in excess of $75 made partly as a contribution and partly for goods and services provided to the payor? ....................
7a
Yes
 
b
If "Yes," did the organization notify the donor of the value of the goods or services provided? .....
7b
Yes
 
c
Did the organization sell, exchange, or otherwise dispose of tangible personal property for which it was required to file Form 8282? .........................
7c
 
No
d
If "Yes," indicate the number of Forms 8282 filed during the year ....
7d
 
e
Did the organization receive any funds, directly or indirectly, to pay premiums on a personal benefit contract?
7e
 
No
f
Did the organization, during the year, pay premiums, directly or indirectly, on a personal benefit contract? ..
7f
 
No
g
If the organization received a contribution of qualified intellectual property, did the organization file Form 8899 as required? ......................
7g
 
 
h
If the organization received a contribution of cars, boats, airplanes, or other vehicles, did the organization file a Form 1098-C? ..........................
7h
 
 
8
Sponsoring organizations maintaining donor advised funds. Did a donor advised fund maintained by the sponsoring organization have excess business holdings at any time during the year? ........
8
 
 
9
Sponsoring organizations maintaining donor advised funds.
a
Did the sponsoring organization make any taxable distributions under section 4966?........
9a
 
 
b
Did the sponsoring organization make a distribution to a donor, donor advisor, or related person?...
9b
 
 
10
Section 501(c)(7) organizations. Enter:
a
Initiation fees and capital contributions included on Part VIII, line 12 ...
10a
 
b
Gross receipts, included on Form 990, Part VIII, line 12, for public use of club facilities
10b
 
11
Section 501(c)(12) organizations. Enter:
a
Gross income from members or shareholders .........
11a
 
b
Gross income from other sources. (Do not net amounts due or paid to other sources against amounts due or received from them.) ..........
11b
 
12a
Section 4947(a)(1) non-exempt charitable trusts. Is the organization filing Form 990 in lieu of Form 1041?
12a
 
 
b
If "Yes," enter the amount of tax-exempt interest received or accrued during the year.
12b
 
13
Section 501(c)(29) qualified nonprofit health insurance issuers.
a
Is the organization licensed to issue qualified health plans in more than one state? .........
Note. See the instructions for additional information the organization must report on Schedule O.
13a
 
 
b
Enter the amount of reserves the organization is required to maintain by the states in which the organization is licensed to issue qualified health plans ....
13b
 
c
Enter the amount of reserves on hand ............
13c
 
14a
Did the organization receive any payments for indoor tanning services during the tax year?.....
14a
 
No
b
If "Yes," has it filed a Form 720 to report these payments? If "No," provide an explanation in Schedule O..
14b
 
 
15
Is the organization subject to the section 4960 tax on payment(s) of more than $1,000,000 in remuneration or excess parachute payment(s) during the year? ....................
If "Yes," see the instructions and file Form 4720, Schedule N.
15
 
No
16
Is the organization an educational institution subject to the section 4968 excise tax on net investment income? ..
If "Yes," complete Form 4720, Schedule O.
16
 
No
17
Section 501(c)(21) organizations. Did the trust, or any disqualified or other person engage in any activities that would result in the imposition of an excise tax under section 4951, 4952, or 4953? ..
If "Yes," complete Form 6069.
17
 
 
Form 990 (2024)
Form 990 (2024)
Page 6
Part VI
Governance, Management, and Disclosure. For each "Yes" response to lines 2 through 7b below, and for a "No" response to lines 8a, 8b, or 10b below, describe the circumstances, processes, or changes in Schedule O. See instructions.
Check if Schedule O contains a response or note to any line in this Part VI..............
Section A. Governing Body and Management
Yes
No
1a
Enter the number of voting members of the governing body at the end of the tax year
1a
19
If there are material differences in voting rights among members of the governing body, or if the governing body delegated broad authority to an executive committee or similar committee, explain in Schedule O.
b
Enter the number of voting members included in line 1a, above, who are independent
1b
17
2
Did any officer, director, trustee, or key employee have a family relationship or a business relationship with any other officer, director, trustee, or key employee? .................
2
 
No
3
Did the organization delegate control over management duties customarily performed by or under the direct supervision of officers, directors or trustees, or key employees to a management company or other person? .
3
 
No
4
Did the organization make any significant changes to its governing documents since the prior Form 990 was filed? .
4
 
No
5
Did the organization become aware during the year of a significant diversion of the organization’s assets? .
5
 
No
6
Did the organization have members or stockholders? ................
6
 
No
7a
Did the organization have members, stockholders, or other persons who had the power to elect or appoint one or more members of the governing body? ....................
7a
 
No
b
Are any governance decisions of the organization reserved to (or subject to approval by) members, stockholders, or persons other than the governing body? ...................
7b
 
No
8
Did the organization contemporaneously document the meetings held or written actions undertaken during the year by the following:
a
The governing body? .......................
8a
Yes
 
b
Each committee with authority to act on behalf of the governing body? ............
8b
Yes
 
9
Is there any officer, director, trustee, or key employee listed in Part VII, Section A, who cannot be reached at the organization’s mailing address? If "Yes," provide the names and addresses in Schedule O.......
9
 
No
Section B. Policies (This Section B requests information about policies not required by the Internal Revenue Code.)
Yes
No
10a
Did the organization have local chapters, branches, or affiliates? ............
10a
 
No
b
If "Yes," did the organization have written policies and procedures governing the activities of such chapters, affiliates, and branches to ensure their operations are consistent with the organization's exempt purposes?
10b
 
 
11a
Has the organization provided a complete copy of this Form 990 to all members of its governing body before filing the form? ............................
11a
Yes
 
b
Describe on Schedule O the process, if any, used by the organization to review this Form 990. .....
12a
Did the organization have a written conflict of interest policy? If "No," go to line 13.......
12a
Yes
 
b
Were officers, directors, or trustees, and key employees required to disclose annually interests that could give rise to conflicts? ..........................
12b
Yes
 
c
Did the organization regularly and consistently monitor and enforce compliance with the policy? If "Yes," describe on Schedule O how this was done...................
12c
Yes
 
13
Did the organization have a written whistleblower policy? ...............
13
Yes
 
14
Did the organization have a written document retention and destruction policy? .........
14
Yes
 
15
Did the process for determining compensation of the following persons include a review and approval by independent persons, comparability data, and contemporaneous substantiation of the deliberation and decision?
a
The organization’s CEO, Executive Director, or top management official ...........
15a
Yes
 
b
Other officers or key employees of the organization ................
15b
Yes
 
If "Yes" to line 15a or 15b, describe the process on Schedule O. See instructions.
16a
Did the organization invest in, contribute assets to, or participate in a joint venture or similar arrangement with a taxable entity during the year? ......................
16a
 
No
b
If "Yes," did the organization follow a written policy or procedure requiring the organization to evaluate its participation in joint venture arrangements under applicable federal tax law, and take steps to safeguard the organization’s exempt status with respect to such arrangements? ............
16b
 
 
Section C. Disclosure
17
List the states with which a copy of this Form 990 is required to be filed
AL , AK , AZ , AR , CA , CO , CT , FL , GA , IL , KS , KY , ME , MD , MS , MI , MN , MS , MO , NH , NJ , NM , NY , NC , ND , OH , OK , OR , PA , RI , SC , TN , UT , VA , WA , WV , WI , MA
18
Section 6104 requires an organization to make its Form 1023 (1024 or 1024-A, if applicable), 990, and 990-T (section 501(c)(3)s only) available for public inspection. Indicate how you made these available. Check all that apply.
19
Describe in Schedule O whether (and if so, how) the organization made its governing documents, conflict of interest policy, and financial statements available to the public during the tax year.
20
State the name, address, and telephone number of the person who possesses the organization's books and records:
JENNIFER FARMER533 W UWCHLAN AVENUE   DOWNINGTOWN,PA19335 (484) 879-6160
Form 990 (2024)
Form 990 (2024)
Page 7
Part VII
Compensation of Officers, Directors,Trustees, Key Employees, Highest Compensated Employees, and Independent Contractors
Check if Schedule O contains a response or note to any line in this Part VII..............
Section A. Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees
1a Complete this table for all persons required to be listed. Report compensation for the calendar year ending with or within the organization’s tax year.
RoundBullet List all of the organization’s current officers, directors, trustees (whether individuals or organizations), regardless of amount
of compensation. Enter -0- in columns (D), (E), and (F) if no compensation was paid.

RoundBullet List all of the organization’s current key employees, if any. See the instructions for definition of "key employee."
RoundBullet List the organization’s five current highest compensated employees (other than an officer, director, trustee or key employee)
who received reportable compensation (box 5 of Form W-2, box 6 of Form 1099-MISC, and/or box 1 of Form 1099-NEC) of more than $100,000 from the organization and any related organizations.

RoundBullet List all of the organization’s former officers, key employees, or highest compensated employees who received more than $100,000
of reportable compensation from the organization and any related organizations.

RoundBullet List all of the organization’s former directors or trustees that received, in the capacity as a former director or trustee of the
organization, more than $10,000 of reportable compensation from the organization and any related organizations.

See the instructions for the order in which to list the persons above.
Check this box if neither the organization nor any related organization compensated any current officer, director, or trustee.
(A)
Name and title 		(B)
Average hours per week (list any hours for related organizations below dotted line) 		(C)
Position (do not check more than one box, unless person is both an officer and a director/trustee) 		(D)
Reportable compensation from the organization (W-2/1099-MISC/1099-NEC) 		(E)
Reportable compensation from related organizations (W-2/1099-MISC/1099-NEC) 		(F)
Estimated amount of other compensation from the organization and related organizations
Individual Trustee or Director; Institutional Trustee; OfficerInd; Key Employee; Highest compensated employee; FormerOfcrDirectorTrusteeInd;
(1) RONALD BARTEK......................................................................
PRESIDENT/DIRECTOR
 40.00
.................
  		X   X       110,000 0 3,811
(2) RUTH ACTON......................................................................
TREASURER/DIRECTOR FINANCE
 25.00
.................
  		X   X       51,000 0 16,964
(3) PAUL AVERY......................................................................
CHAIRMAN/ DIRECTOR
 10.00
.................
  		X   X       0 0 0
(4) MAUREEN JUIP......................................................................
SECRETARY/ DIRECTOR
 10.00
.................
  		X   X       0 0 0
(5) DR SANJAY BIDICHANDANI......................................................................
DIRECTOR
 10.00
.................
  		X           0 0 0
(6) BRIGID BRENNAN......................................................................
DIRECTOR/ GENERAL COUNSEL
 20.00
.................
  		X           0 0 0
(7) THOMAS BRENNINKMEIJER......................................................................
DIRECTOR
 10.00
.................
  		X           0 0 0
(8) ALEX FIELDING......................................................................
DIRECTOR
 10.00
.................
  		X           0 0 0
(9) JENNIFER GOOD......................................................................
DIRECTOR
 10.00
.................
  		X           0 0 0
(10) THOMAS HAMILTON......................................................................
DIRECTOR
 10.00
.................
  		X           0 0 0
(11) DR HOLLY HEDRICK......................................................................
DIRECTOR
 10.00
.................
  		X           0 0 0
(12) DEREK G HENNECKE......................................................................
DIRECTOR
 10.00
.................
  		X           0 0 0
(13) WARREN HUFF......................................................................
DIRECTOR
 10.00
.................
  		X           0 0 0
(14) DR STEVE KLASKO......................................................................
DIRECTOR
 10.00
.................
  		X           0 0 0
(15) DR KATHY MATHEWS......................................................................
DIRECTOR
 10.00
.................
  		X           0 0 0
(16) DR JAMES MCARTHUR......................................................................
DIRECTOR
 10.00
.................
  		X           0 0 0
(17) TONY PLOHOROS......................................................................
DIRECTOR
 10.00
.................
  		X           0 0 0
Form 990 (2024)
Form 990 (2024)
Page 8
Part VII
Section A. Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees (continued)
(A)
Name and title 		(B)
Average hours per week (list any hours for related organizations below dotted line) 		(C)
Position (do not check more than one box, unless person is both an officer and a director/trustee) 		(D)
Reportable compensation from the organization (W-2/1099-MISC/1099-NEC) 		(E)
Reportable compensation from related organizations (W-2/1099-MISC/1099-NEC) 		(F)
Estimated amount of other compensation from the organization and related organizations
Individual Trustee or Director; Institutional Trustee; OfficerInd; Key Employee; Highest compensated employee; FormerOfcrDirectorTrusteeInd;
(18) PATRICK RITSCHEL........................................................................
DIRECTOR
 10.00
.......................   		X           0 0 0
(19) DR JAMES R RUSCHE........................................................................
DIRECTOR
 10.00
.......................   		X           0 0 0
(20) JENNIFER M FARMER........................................................................
CHIEF EXECUTIVE OFFICER
 40.00
.......................   		    X       165,000 0 5,678
(21) BARBARA A TATE........................................................................
CHIEF SCIENTIFIC OFFICER
 40.00
.......................   		        X   250,000 0 5,527
(22) ELISABETTA SORAGNI........................................................................
DIRECTOR OF RESEARCH
 40.00
.......................   		        X   115,851 0 16,023
(23) FELICIA DEROSA........................................................................
VP FUNDRAISING & COMMS
 40.00
.......................   		        X   106,351 0 12,292














1b Sub-Total..............
c Total from continuation sheets to Part VII, Section A..
d Total (add lines 1b and 1c)......... 798,202 0 60,295
2
Total number of individuals (including but not limited to those listed above) who received more than $100,000 of reportable compensation from the organization 5
Yes
No
3
Did the organization list any former officer, director or trustee, key employee, or highest compensated employee on line 1a? If "Yes," complete Schedule J for such individual ..............
3
 
No
4
For any individual listed on line 1a, is the sum of reportable compensation and other compensation from the organization and related organizations greater than $150,000? If "Yes," complete Schedule J for such
individual...........................
4
Yes
 
5
Did any person listed on line 1a receive or accrue compensation from any unrelated organization or individual for services rendered to the organization? If "Yes," complete Schedule J for such person ........
5
 
No
Section B. Independent Contractors
1
Complete this table for your five highest compensated independent contractors that received more than $100,000 of compensation from the organization. Report compensation for the calendar year ending with or within the organization’s tax year.
(A)
Name and business address 		(B)
Description of services 		(C)
Compensation
CAMENE BVBA-MYRIAM ABOUAZAR-RAI

BRUSSELBAAN 473
SINTPIETERSLEEUW,FLEMISH BRABANT1600
BE 		INTERNATIONAL RESEARCH AND ADVOCACY CONS 132,135
2
Total number of independent contractors (including but not limited to those listed above) who received more than $100,000 of compensation from the organization 1
Form 990 (2024)
Form 990 (2024)
Page 9
Part VIII
Statement of Revenue
Check if Schedule O contains a response or note to any line in this Part VIII.............
(A)
Total revenue 		(B)
Related or
exempt
function
revenue 		(C)
Unrelated
business
revenue 		(D)
Revenue
excluded from
tax under sections
512 - 514
Contributions, Gifts, Grants, and OtherAmt Similar Amounts 1a Federated campaigns..1a 7,072
b Membership dues..1b  
c Fundraising events..1c 3,362,180
d Related organizations1d  
e Government grants (contributions)1e  
f All other contributions, gifts, grants, and similar amounts not included above1f 10,147,813
g Noncash contributions included in lines 1a - 1f:$ 1g 881,511
h Total. Add lines 1a-1f....... 13,517,065
Program Service RevenueAmt Business Code
2a
b
c
d
e
f All other program service revenue.        
g Total. Add lines 2a–2f .....  
OtherAmtRevenueAmt 3 Investment income (including dividends, interest, and othersimilar amounts) ...... 145,621     145,621
4 Income from investment of tax-exempt bond proceeds        
5 Royalties...........        
(i) Real (ii) Personal
6a Gross rents 6a    
b Less: rental expenses 6b    
c Rental income or (loss) 6c    
d Net rental income or (loss).......        
(i) Securities (ii) Other
7a Gross amount from sales of assets other than inventory 7a 645,455  
b Less: cost or other basis and sales expenses 7b 618,745  
c Gain or (loss) 7c 26,710  
d Net gain or (loss)......... 26,710     26,710
8a Gross income from fundraising events (not including $ 3,362,180of contributions reported on line 1c). See Part IV, line 18 ....
8a 648,785
b Less: direct expenses ... 8b 1,202,755
c Net income or (loss) from fundraising events.. -553,970   -553,970
9a Gross income from gaming activities.
See Part IV, line 19 ...
9a  
b Less: direct expenses ... 9b  
c Net income or (loss) from gaming activities..        
10a Gross sales of inventory, less
returns and allowances ..
10a  
b Less: cost of goods sold .. 10b  
c Net income or (loss) from sales of inventory..        
OtherRevenueMiscAmt
Business Code
11a            
b            
c            
d All other revenue ....        
e Total. Add lines 11a–11d ......  
12 Total revenue. See instructions..... 13,135,426 0 0 -381,639
Form 990 (2024)
Form 990 (2024)
Page 10
Part IX
Statement of Functional Expenses
Section 501(c)(3) and 501(c)(4) organizations must complete all columns. All other organizations must complete column (A).Check if Schedule O contains a response or note to any line in this Part IX..............
Do not include amounts reported on lines 6b,
7b, 8b, 9b, and 10b of Part VIII. 		(A)
Total expenses 		(B)
Program service expenses 		(C)
Management and general expenses 		(D)
Fundraising
expenses
1 Grants and other assistance to domestic organizations and domestic governments. See Part IV, line 21 .... 7,117,301 7,117,301
2 Grants and other assistance to domestic individuals. See Part IV, line 22 ........... 13,350 13,350
3 Grants and other assistance to foreign organizations, foreign governments, and foreign individuals. See Part IV, lines 15 and 16. ............. 3,337,159 3,337,159
4 Benefits paid to or for members .......    
5 Compensation of current officers, directors, trustees, and key employees ........... 352,453 235,494 77,129 39,830
6 Compensation not included above, to disqualified persons (as defined under section 4958(f)(1)) and persons described in section 4958(c)(3)(B) .........        
7 Other salaries and wages........ 1,005,136 743,605 145,566 115,965
8 Pension plan accruals and contributions (include section 401(k) and 403(b) employer contributions) .... 22,699 17,493 3,331 1,875
9 Other employee benefits ....... 94,846 79,156 5,460 10,230
10 Payroll taxes ........... 97,523 72,766 15,658 9,099
11 Fees for services (non-employees):        
a Management ......        
b Legal .........        
c Accounting ........... 28,777   28,777  
d Lobbying ........... 7,550 7,550    
e Professional fundraising services. See Part IV, line 17    
f Investment management fees ......        
g Other (If line 11g amount exceeds 10% of line 25, column (A) amount, list line 11g expenses on Schedule O) 487,223 383,230 10,373 93,620
12 Advertising and promotion ....        
13 Office expenses ....... 16,786 1,995 5,023 9,768
14 Information technology ......        
15 Royalties ..        
16 Occupancy ........... 47,789 32,849 8,264 6,676
17 Travel ............        
18 Payments of travel or entertainment expenses for any federal, state, or local public officials .        
19 Conferences, conventions, and meetings .... 250,194 198,384 47,520 4,290
20 Interest ...........        
21 Payments to affiliates .......        
22 Depreciation, depletion, and amortization ..        
23 Insurance ... 15,021 2,486 9,213 3,322
24 Other expenses. Itemize expenses not covered above (List miscellaneous expenses in line 24e. If line 24e amount exceeds 10% of line 25, column (A) amount, list line 24e expenses on Schedule O.)
a SUBSCRIPTIONS & LICENSI 306,389 280,541 0 25,848
b CREDIT CARD & BANK FEES 27,790 213 397 27,180
c FACILITIES & EQUIPMENT 15,239 1,000 14,239 0
d PRINTING AND COPYING 13,354 4,091 1,125 8,138
e All other expenses 20,657 5,356 2,682 12,619
25 Total functional expenses. Add lines 1 through 24e 13,277,236 12,534,019 374,757 368,460
26 Joint costs. Complete this line only if the organization reported in column (B) joint costs from a combined educational campaign and fundraising solicitation. Check here if following SOP 98-2 (ASC 958-720).        
Form 990 (2024)
Form 990 (2024)
Page 11
Part X
Balance Sheet
Check if Schedule O contains a response or note to any line in this Part IX..............
(A)
Beginning of year 		(B)
End of year
Assets 1 Cash–non-interest-bearing ........ 3,076,159 1 1,776,063
2 Savings and temporary cash investments ......... 1,880,952 2 2,220,120
3 Pledges and grants receivable, net ...... 766,590 3 693,221
4 Accounts receivable, net .............   4  
5 Loans and other receivables from any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or 35% controlled entity or family member of any of these persons .......
  5  
6 Loans and other receivables from other disqualified persons (as defined under section 4958(f)(1)), and persons described in section 4958(c)(3)(B) ...
  6  
7 Notes and loans receivable, net ...........   7  
8 Inventories for sale or use ............   8  
9 Prepaid expenses and deferred charges ...... 49,155 9 67,503
10a Land, buildings, and equipment: cost or other basis. Complete Part VI of Schedule D 10a  
b Less: accumulated depreciation 10b     10c  
11 Investments—publicly traded securities . 1,870,166 11 1,705,100
12 Investments—other securities. See Part IV, line 11 .....   12 432,680
13 Investments—program-related. See Part IV, line 11 .. 5,458 13 5,458
14 Intangible assets ...............   14  
15 Other assets. See Part IV, line 11 ........... 103,796 15 46,404
16 Total assets. Add lines 1 through 15 (must equal line 33)... 7,752,276 16 6,946,549
Liabilities 17 Accounts payable and accrued expenses ..... 1,489,034 17 615,612
18 Grants payable ...   18  
19 Deferred revenue ......... 4,567 19 10,630
20 Tax-exempt bond liabilities .........   20  
21 Escrow or custodial account liability. Complete Part IV of Schedule D   21  
22 Loans and other payables to any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or 35% controlled entity or family member of any of these persons .........
  22  
23 Secured mortgages and notes payable to unrelated third parties ..   23  
24 Unsecured notes and loans payable to unrelated third parties ..   24  
25 Other liabilities (including federal income tax, payables to related third parties, and other liabilities not included on lines 17 - 24). Complete Part X of Schedule D 112,047 25 49,940
26 Total liabilities. Add lines 17 through 25.. 1,605,648 26 676,182
Net Assets or Fund Balance Organizations that follow FASB ASC 958, check here and complete lines 27, 28, 32, and 33.
27 Net assets without donor restrictions .......... 5,182,849 27 3,919,967
28 Net assets with donor restrictions ........... 963,779 28 2,350,400
Organizations that do not follow FASB ASC 958, check here right arrow and complete lines 29 through 33.
29 Capital stock or trust principal, or current funds .....   29  
30 Paid-in or capital surplus, or land, building or equipment fund ...   30  
31 Retained earnings, endowment, accumulated income, or other funds   31  
32 Total net assets or fund balances ........... 6,146,628 32 6,270,367
33 Total liabilities and net assets/fund balances ........ 7,752,276 33 6,946,549
Form 990 (2024)
Form 990 (2024)
Page 12
Part XI
Reconcilliation of Net Assets
Check if Schedule O contains a response or note to any line in this Part XI..............
1
Total revenue (must equal Part VIII, column (A), line 12) ............
1
13,135,426
2
Total expenses (must equal Part IX, column (A), line 25) ............
2
13,277,236
3
Revenue less expenses. Subtract line 2 from line 1 ..............
3
-141,810
4
Net assets or fund balances at beginning of year (must equal Part X, line 32, column (A)) ..
4
6,146,628
5
Net unrealized gains (losses) on investments ...............
5
173,831
6
Donated services and use of facilities .................
6
 
7
Investment expenses .....................
7
 
8
Prior period adjustments .....................
8
 
9
Other changes in net assets or fund balances (explain in Schedule O) ........
9
91,718
10
Net assets or fund balances at end of year. Combine lines 3 through 9 (must equal Part X, line 32, column (B))
10
6,270,367
Part XII
Financial Statements and Reporting
Check if Schedule O contains a response or note to any line in this Part XII.............
Yes
No
1
Accounting method used to prepare the Form 990:  
If the organization changed its method of accounting from a prior year or checked "Other," explain on
Schedule O.
2a
Were the organization’s financial statements compiled or reviewed by an independent accountant?
2a
 
No
If ‘Yes,’ check a box below to indicate whether the financial statements for the year were compiled or reviewed on a separate basis, consolidated basis, or both:
b
Were the organization’s financial statements audited by an independent accountant?
2b
Yes
 
If ‘Yes,’ check a box below to indicate whether the financial statements for the year were audited on a separate basis, consolidated basis, or both:
c
If "Yes," to line 2a or 2b, does the organization have a committee that assumes responsibility for oversight of the audit, review, or compilation of its financial statements and selection of an independent accountant?
2c
Yes
 
If the organization changed either its oversight process or selection process during the tax year, explain in Schedule O.
3a
As a result of a federal award, was the organization required to undergo an audit or audits as set forth in the Uniform Guidance, 2 C.F.R. Part 200, Subpart F?
3a
 
No
b
If "Yes," did the organization undergo the required audit or audits? If the organization did not undergo the required audit or audits, explain why in Schedule O and describe any steps taken to undergo such audits.
3b
 
 
Form 990 (2024)
Form 990 (2024)
Additional Data


Software ID:  
Software Version:  
Form 990, Special Condition Description:
Special Condition Description
SCHEDULE A
(Form 990)

Department of the Treasury
Internal Revenue Service
Public Charity Status and Public Support
Complete if the organization is a section 501(c)(3) organization or a section 4947(a)(1) nonexempt charitable trust.
right arrow Attach to Form 990 or Form 990-EZ.
right arrow Go to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
2024
Open to Public
Inspection
Name of the organization
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE
 
Employer identification number

52-2122720
Part I
Reason for Public Charity Status (All organizations must complete this part.) See instructions.
The organization is not a private foundation because it is: (For lines 1 through 12, check only one box.)
1
2
3
4
5
6
7
8
9
10
11
12
a
b
c
d
e
f
Enter the number of supported organizations ...............................  
g
Provide the following information about the supported organization(s).
(i) Name of supported organization (ii) EIN (iii) Type of organization (described on lines 1- 10 above (see instructions)) (iv) Is the organization listed in your governing document? (v) Amount of monetary support (see instructions) (vi) Amount of other support (see instructions)
Yes No
Total
 
   
For Paperwork Reduction Act Notice, see the Instructions for
Form 990 or 990-EZ.
Cat. No. 11285F
Schedule A (Form 990) 2024

Schedule A (Form 990) 2024
Page 2
Part II
Support Schedule for Organizations Described in Sections 170(b)(1)(A)(iv) and 170(b)(1)(A)(vi)
(Complete only if you checked the box on line 5, 7, or 8 of Part I or if the organization failed to qualify under Part III. If the organization failed to qualify under the tests listed below, please complete Part III.)
Section A. Public Support
Calendar year (or fiscal year beginning in) right arrow (a) 2020 (b) 2021 (c) 2022 (d) 2023 (e) 2024 (f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. 12,628,384 7,808,772 11,604,349 12,011,078 13,517,065 57,569,648
2 Tax revenues levied for the organization's benefit and either paid to or expended on its behalf ....            
3 The value of services or facilities furnished by a governmental unit to the organization without charge..            
4 Total. Add lines 1 through 3 12,628,384 7,808,772 11,604,349 12,011,078 13,517,065 57,569,648
5 The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f) .. 16,878,960
6 Public support. Subtract line 5 from line 4. 40,690,688
Section B. Total Support
Calendar year (or fiscal year beginning in) right arrow (a) 2020 (b) 2021 (c) 2022 (d) 2023 (e) 2024 (f) Total
7 Amounts from line 4.. 12,628,384 7,808,772 11,604,349 12,011,078 13,517,065 57,569,648
8 Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... 38,997 47,170 65,540 130,614 145,621 427,942
9 Net income from unrelated business activities, whether or not the business is regularly carried on..            
10 Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.)..            
11 Total support. Add lines 7 through 10 57,997,590
12
12
 
13
First 5 years. If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a section 501(c)(3) organization, check this box and stop here ........................................right arrow
Section C. Computation of Public Support Percentage
14
14
70.160 %
15
15
74.780 %
16a
33 1/3% support test—2024. If the organization did not check the box on line 13, and line 14 is 33 1/3% or more, check this box
and stop here. The organization qualifies as a publicly supported organization .......................right arrow
b
33 1/3% support test—2023. If the organization did not check a box on line 13 or 16a, and line 15 is 33 1/3% or more, check this
box and stop here. The organization qualifies as a publicly supported organization ..................... right arrow
17a
10%-facts-and-circumstances test—2024. If the organization did not check a box on line 13, 16a, or 16b, and line 14 is 10% or more, and if the organization meets the "facts-and-circumstances" test, check this box and stop here. Explain in Part VI how the organization meets the "facts-and-circumstances" test. The organization qualifies as a publicly supported organization ............ right arrow
b
10%-facts-and-circumstances test—2023. If the organization did not check a box on line 13, 16a, 16b, or 17a, and line 15 is 10% or more, and if the organization meets the "facts-and-circumstances" test, check this box and stop here. Explain in Part VI how the organization meets the "facts-and-circumstances" test. The organization qualifies as a publicly supported organization ............ right arrow
18
Private foundation. If the organization did not check a box on line 13, 16a, 16b, 17a, or 17b, check this box and see
instructions ..................................................... right arrow
Schedule A (Form 990) 2024

Schedule A (Form 990) 2024
Page 3
Part III
Support Schedule for Organizations Described in Section 509(a)(2)
(Complete only if you checked the box on line 10 of Part I or if the organization failed to qualify under Part II. If the organization fails to qualify under the tests listed below, please complete Part II.)
Section A. Public Support
Calendar year (or fiscal year beginning in) right arrow (a) 2020 (b) 2021 (c) 2022 (d) 2023 (e) 2024 (f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") .            
2 Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose            
3 Gross receipts from activities that are not an unrelated trade or business under section 513 .....            
4 Tax revenues levied for the organization's benefit and either paid to or expended on its behalf...            
5 The value of services or facilities furnished by a governmental unit to the organization without charge            
6 Total. Add lines 1 through 5            
7a Amounts included on lines 1, 2, and 3 received from disqualified persons            
b Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year.            
c Add lines 7a and 7b..            
8 Public support. (Subtract line 7c from line 6.)  
Section B. Total Support
Calendar year (or fiscal year beginning in) right arrow (a) 2020 (b) 2021 (c) 2022 (d) 2023 (e) 2024 (f) Total
9 Amounts from line 6...            
10a Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources..            
b Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975.            
c Add lines 10a and 10b.            
11 Net income from unrelated business activities not included on line 10b, whether or not the business is regularly carried on.            
12 Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) ..            
13 Total support. (Add lines 9, 10c, 11, and 12.)..            
14
First 5 years. If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a section 501(c)(3) organization, check this box and stop here................................................. right arrow
Section C. Computation of Public Support Percentage
15
15
 
16
16
 
Section D. Computation of Investment Income Percentage
17
17
 
18
18
 
19a
33 1/3% support tests-2024. If the organization did not check the box on line 14, and line 15 is more than 33 1/3%, and line 17 is not more than 33 1/3%, check this box and stop here. The organization qualifies as a publicly supported organization ....... right arrow
b
33 1/3 % support tests—2023. If the organization did not check a box on line 14 or line 19a, and line 16 is more than 33 1/3% and line 18 is not more than 33 1/3%, check this box and stop here. The organization qualifies as a publicly supported organization ..... right arrow
20
Private foundation. If the organization did not check a box on line 14, 19a, or 19b, check this box and see instructions .... right arrow
Schedule A (Form 990) 2024

Schedule A (Form 990) 2024
Page 4
Part IV
Supporting Organizations
(Complete only if you checked a box on line 12 of Part I. If you checked box 12a, of Part I, complete Sections A and B. If you checked box 12b, of Part I, complete Sections A and C. If you checked box 12c, of Part I, complete Sections A, D, and E. If you checked box12d, of Part I, complete Sections A and D, and complete Part V.)
Section A. All Supporting Organizations
Yes
No
1
Are all of the organization’s supported organizations listed by name in the organization’s governing documents?
If "No," describe in Part VI how the supported organizations are designated. If designated by class or purpose,
describe the designation. If historic and continuing relationship, explain.
1
 
 
2
Did the organization have any supported organization that does not have an IRS determination of status under section 509(a)(1) or (2)? If "Yes," explain in Part VI how the organization determined that the supported organization was described in section 509(a)(1) or (2).
2
 
 
3a
Did the organization have a supported organization described in section 501(c)(4), (5), or (6)? If "Yes," answer lines 3b and 3c below.
3a
 
 
b
Did the organization confirm that each supported organization qualified under section 501(c)(4), (5), or (6) and satisfied the public support tests under section 509(a)(2)? If "Yes," describe in Part VI when and how the organization made the determination.
3b
 
 
c
Did the organization ensure that all support to such organizations was used exclusively for section 170(c)(2)(B) purposes? If "Yes," explain in Part VI what controls the organization put in place to ensure such use.
3c
 
 
4a
Was any supported organization not organized in the United States ("foreign supported organization")? If “Yes” and if you checked box 12a or 12b in Part I, answer lines 4b and 4c below.
4a
 
 
b
Did the organization have ultimate control and discretion in deciding whether to make grants to the foreign supported organization? If “Yes,” describe in Part VI how the organization had such control and discretion despite being controlled or supervised by or in connection with its supported organizations.
4b
 
 
c
Did the organization support any foreign supported organization that does not have an IRS determination under sections 501(c)(3) and 509(a)(1) or (2)? If “Yes,” explain in Part VI what controls the organization used to ensure that all support to the foreign supported organization was used exclusively for section 170(c)(2)(B) purposes.
4c
 
 
5a
Did the organization add, substitute, or remove any supported organizations during the tax year? If “Yes,” answer lines 5b and 5c below (if applicable). Also, provide detail in Part VI, including (i) the names and EIN numbers of the supported organizations added, substituted, or removed; (ii) the reasons for each such action; (iii) the authority under the organization's organizing document authorizing such action; and (iv) how the action was accomplished (such as by amendment to the organizing document).
5a
 
 
b
Type I or Type II only. Was any added or substituted supported organization part of a class already designated in the organization's organizing document?
5b
 
 
c
Substitutions only. Was the substitution the result of an event beyond the organization's control?
5c
 
 
6
Did the organization provide support (whether in the form of grants or the provision of services or facilities) to anyone other than (i) its supported organizations, (ii) individuals that are part of the charitable class benefited by one or more of its supported organizations, or (iii) other supporting organizations that also support or benefit one or more of the filing organization’s supported organizations? If “Yes,” provide detail in Part VI.
6
 
 
7
Did the organization provide a grant, loan, compensation, or other similar payment to a substantial contributor (defined in section 4958(c)(3)(C)), a family member of a substantial contributor, or a 35% controlled entity with regard to a substantial contributor? If “Yes,” complete Part I of Schedule L (Form 990) .
7
 
 
8
Did the organization make a loan to a disqualified person (as defined in section 4958) not described on line 7? If “Yes,” complete Part I of Schedule L (Form 990).
8
 
 
9a
Was the organization controlled directly or indirectly at any time during the tax year by one or more disqualified persons, as defined in section 4946 (other than foundation managers and organizations described in section 509(a)(1) or (2))? If “Yes,” provide detail in Part VI.
9a
 
 
b
Did one or more disqualified persons (as defined on line 9a) hold a controlling interest in any entity in which the supporting organization had an interest? If “Yes,” provide detail in Part VI.
9b
 
 
c
Did a disqualified person (as defined on line 9a) have an ownership interest in, or derive any personal benefit from, assets in which the supporting organization also had an interest? If “Yes,” provide detail in Part VI.
9c
 
 
10a
Was the organization subject to the excess business holdings rules of section 4943 because of section 4943(f) (regarding certain Type II supporting organizations, and all Type III non-functionally integrated supporting organizations)? If “Yes,” answer line 10b below.
10a
 
 
b
Did the organization have any excess business holdings in the tax year? (Use Schedule C, Form 4720, to determine whether the organization had excess business holdings).
10b
 
 
Schedule A (Form 990) 2024

Schedule A (Form 990) 2024
Page 5
Part IV
Supporting Organizations (continued)
Yes
No
11
Has the organization accepted a gift or contribution from any of the following persons?
a
A person who directly or indirectly controls, either alone or together with persons described on lines 11b and 11c below, the governing body of a supported organization?
11a
 
 
b
A family member of a person described on 11a above?
11b
 
 
c
A 35% controlled entity of a person described on line 11a or 11b above? If “Yes” to 11a, 11b, or 11c, provide detail in Part VI.
11c
 
 
Section B. Type I Supporting Organizations
Yes
No
1
Did the officers, directors, trustees, or membership of one or more supported organizations have the power to regularly appoint or elect at least a majority of the organization’s directors or trustees at all times during the tax year? If “No,” describe in Part VI how the supported organization(s) effectively operated, supervised, or controlled the organization’s activities. If the organization had more than one supported organization, describe how the powers to appoint and/or remove directors or trustees were allocated among the supported organizations and what conditions or restrictions, if any, applied to such powers during the tax year.
1
 
 
2
Did the organization operate for the benefit of any supported organization other than the supported organization(s) that operated, supervised, or controlled the supporting organization? If “Yes,” explain in Part VI how providing such benefit carried out the purposes of the supported organization(s) that operated, supervised or controlled the supporting organization.
2
 
 
Section C. Type II Supporting Organizations
Yes
No
1
Were a majority of the organization’s directors or trustees during the tax year also a majority of the directors or trustees of each of the organization’s supported organization(s)? If “No,” describe in Part VI how control or management of the supporting organization was vested in the same persons that controlled or managed the supported organization(s).
1
 
 
Section D. All Type III Supporting Organizations
Yes
No
1
Did the organization provide to each of its supported organizations, by the last day of the fifth month of the organization’s tax year, (i) a written notice describing the type and amount of support provided during the prior tax year, (ii) a copy of the Form 990 that was most recently filed as of the date of notification, and (iii) copies of the organization’s governing documents in effect on the date of notification, to the extent not previously provided?
1
 
 
2
Were any of the organization’s officers, directors, or trustees either (i) appointed or elected by the supported organization(s) or (ii) serving on the governing body of a supported organization? If "No," explain in Part VI how the organization maintained a close and continuous working relationship with the supported organization(s).
2
 
 
3
By reason of the relationship described in line 2 above, did the organization’s supported organizations have a significant voice in the organization’s investment policies and in directing the use of the organization’s income or assets at all times during the tax year? If "Yes," describe in Part VI the role the organization’s supported organizations played in this regard.
3
 
 
Section E. Type III Functionally-Integrated Supporting Organizations
1
Check the box next to the method that the organization used to satisfy the Integral Part Test during the year (see instructions):
a
b
c
2
Activities Test. Answer lines 2a and 2b below.
Yes
No
a
Did substantially all of the organization’s activities during the tax year directly further the exempt purposes of the supported organization(s) to which the organization was responsive? If "Yes," then in Part VI identify those supported organizations and explain how these activities directly furthered their exempt purposes, how the organization was responsive to those supported organizations, and how the organization determined that these activities constituted substantially all of its activities.
2a
 
 
b
Did the activities described on line 2a, above constitute activities that, but for the organization’s involvement, one or more of the organization’s supported organization(s) would have been engaged in? If "Yes," explain in Part VI the reasons for the organization’s position that its supported organization(s) would have engaged in these activities but for the organization’s involvement.
2b
 
 
3
Parent of Supported Organizations. Answer lines 3a and 3b below.
a
Did the organization have the power to regularly appoint or elect a majority of the officers, directors, or trustees of each of the supported organizations?If "Yes" or "No", provide details in Part VI.
3a
 
 
b
Did the organization exercise a substantial degree of direction over the policies, programs and activities of each of its supported organizations? If "Yes," describe in Part VI. the role played by the organization in this regard.
3b
 
 
Schedule A (Form 990) 2024

Schedule A (Form 990) 2024
Page 6
Part V
Type III Non-Functionally Integrated 509(a)(3) Supporting Organizations
1
Section A - Adjusted Net Income (A) Prior Year (B) Current Year
(optional)
1 Net short-term capital gain 1    
2 Recoveries of prior-year distributions 2    
3 Other gross income (see instructions) 3    
4 Add lines 1 through 3 4    
5 Depreciation and depletion 5    
6 Portion of operating expenses paid or incurred for production or collection of gross income or for management, conservation, or maintenance of property held for production of income (see instructions) 6    
7 Other expenses (see instructions) 7    
8 Adjusted Net Income (subtract lines 5, 6 and 7 from line 4) 8    
Section B - Minimum Asset Amount (A) Prior Year (B) Current Year
(optional)
1 Aggregate fair market value of all non-exempt-use assets (see instructions for short tax year or assets held for part of year): 1
a Average monthly value of securities 1a    
b Average monthly cash balances 1b    
c Fair market value of other non-exempt-use assets 1c    
d Total (add lines 1a, 1b, and 1c) 1d    
e Discount claimed for blockage or other factors
(explain in detail in Part VI):  
2 Acquisition indebtedness applicable to non-exempt use assets 2    
3 Subtract line 2 from line 1d 3    
4 Cash deemed held for exempt use. Enter 0.015 of line 3 (for greater amount, see instructions). 4    
5 Net value of non-exempt-use assets (subtract line 4 from line 3) 5    
6 Multiply line 5 by 0.035 6    
7 Recoveries of prior-year distributions 7    
8 Minimum Asset Amount (add line 7 to line 6) 8    
Section C - Distributable Amount Current Year
1 Adjusted net income for prior year (from Section A, line 8, Column A) 1  
2 Enter 85% of line 1 2  
3 Minimum asset amount for prior year (from Section B, line 8, Column A) 3  
4 Enter greater of line 2 or line 3 4  
5 Income tax imposed in prior year 5  
6 Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions) 6  
7
Schedule A (Form 990) 2024

Schedule A (Form 990) 2024
Page 7
Part V
Type III Non-Functionally Integrated 509(a)(3) Supporting Organizations(continued)
Section D - Distributions Current Year
1 Amounts paid to supported organizations to accomplish exempt purposes 1  
2 Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in
excess of income from activity 		2  
3 Administrative expenses paid to accomplish exempt purposes of supported organizations 3  
4 Amounts paid to acquire exempt-use assets 4  
5 Qualified set-aside amounts (prior IRS approval required - provide details in Part VI) 5  
6 Other distributions (describe in Part VI). See instructions 6  
7Total annual distributions. Add lines 1 through 6. 7  
8 Distributions to attentive supported organizations to which the organization is responsive (provide
details in Part VI). See instructions 		8  
9 Distributable amount for 2024 from Section C, line 6 9  
10 Line 8 amount divided by Line 9 amount 10  
Section E - Distribution Allocations (see instructions) (i)
Excess Distributions 		(ii)
Underdistributions
Pre-2024 		(iii)
Distributable
Amount for 2024
1 Distributable amount for 2024 from Section C, line 6  
2 Underdistributions, if any, for years prior to 2024 (reasonable cause required-- explain in Part VI).
See instructions.		  
3 Excess distributions carryover, if any, to 2024:
a From 2019.......  
b From 2020.......  
c From 2021.......  
d From 2022.......  
e From 2023.......  
fTotal of lines 3a through e  
g Applied to underdistributions of prior years  
h Applied to 2024 distributable amount  
i Carryover from 2019 not applied (see
instructions) 		 
j Remainder. Subtract lines 3g, 3h, and 3i from line 3f.  
4Distributions for 2024 from Section D, line 7:
$  
a Applied to underdistributions of prior years  
b Applied to 2024 distributable amount  
c Remainder. Subtract lines 4a and 4b from line 4.  
5 Remaining underdistributions for years prior to
2024, if any. Subtract lines 3g and 4a from line 2.
If the amount is greater than zero, explain in Part VI.
See instructions. 		 
6 Remaining underdistributions for 2024. Subtract
lines 3h and 4b from line 1. If the amount is greater
than zero, explain in Part VI. See instructions. 		 
7 Excess distributions carryover to 2025. Add lines
3j and 4c. 		 
8 Breakdown of line 7:
a Excess from 2020.....  
b Excess from 2021.....  
c Excess from 2022.....  
d Excess from 2023.....  
e Excess from 2024.....  
Schedule A (Form 990) (2024)

Schedule A (Form 990) 2024
Page 8
Part VI
Supplemental Information. Provide the explanations required by Part II, line 10; Part II, line 17a or 17b; Part III, line 12; Part IV, Section A, lines 1, 2, 3b, 3c, 4b, 4c, 5a, 6, 9a, 9b, 9c, 11a, 11b, and 11c; Part IV, Section B, lines 1 and 2; Part IV, Section C, line 1; Part IV, Section D, lines 2 and 3; Part IV, Section E, lines 1c, 2a, 2b, 3a and 3b; Part V, line 1; Part V, Section B, line 1e; Part V Section D, lines 5, 6, and 8; and Part V, Section E, lines 2, 5, and 6. Also complete this part for any additional information. (See instructions).
Facts And Circumstances Test
 
Return Reference Explanation
Schedule A (Form 990) 2024


Additional Data


Software ID:  
Software Version:  
Schedule B
(Form 990)
(Rev. January 2025)
Department of the Treasury
Internal Revenue Service
Schedule of Contributors

right arrow Attach to Form 990, 990-EZ, or 990-PF.
right arrow Go to www.irs.gov/Form990 for the latest information.
OMB No. 1545-0047
Name of the organization
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE
 
Employer identification number

52-2122720
Organization type (check one):
Filers of:
Section:
Form 990 or 990-EZ
501(c)( ) (enter number) organization

4947(a)(1) nonexempt charitable trust not treated as a private foundation

527 political organization


Form 990-PF
501(c)(3) exempt private foundation

4947(a)(1) nonexempt charitable trust treated as a private foundation

501(c)(3) taxable private foundation
Check if your organization is covered by the General Rule or a Special Rule.  
Note:  Only a section 501(c)(7), (8), or (10) organization can check boxes for both the General Rule and a Special Rule. See instructions.
General Rule
For an organization filing Form 990, 990-EZ, or 990-PF that received, during the year, contributions totaling $5,000 or more (in money or other property) from any one contributor. Complete Parts I and II. See instructions for determining a contributor's total contributions.
Special Rules
For an organization described in section 501(c)(3) filing Form 990 or 990-EZ that met the 331/3% support test of the regulations
under sections 509(a)(1) and 170(b)(1)(A)(vi), that checked Schedule A (Form 990 or 990-EZ), Part II, line 13, 16a, or 16b, and that received from any one contributor, during the year, total contributions of the greater of (1) $5,000 or (2) 2% of the amount on (i) Form 990, Part VIII, line 1h, or (ii) Form 990-EZ, line 1. Complete Parts I and II.
For an organization described in section 501(c)(7), (8), or (10) filing Form 990 or 990-EZ that received from any one contributor,
during the year, total contributions of more than $1,000 exclusively for religious, charitable, scientific, literary, or educational purposes, or for the prevention of cruelty to children or animals. Complete Parts I, II, and III.
For an organization described in section 501(c)(7), (8), or (10) filing Form 990 or 990-EZ that received from any one contributor,
during the year, contributions exclusively for religious, charitable, etc., purposes, but no such contributions totaled more than $1,000. If this box is checked, enter here the total contributions that were received during the year for an exclusively religious, charitable, etc., purpose. Don't complete any of the parts unless the General Rule applies to this organization because it received nonexclusively religious, charitable, etc., contributions totaling $5,000 or more during the year ......... Right Arrow $  
Caution: An organization that isn't covered by the General Rule and/or the Special Rules doesn't file Schedule B (Form 990,
990-EZ, or 990-PF), but it must answer “No” on Part IV, line 2, of its Form 990; or check the box on line H of its Form 990-EZ
or on its Form 990PF, Part I, line 2, to certify that it doesn't meet the filing requirements of Schedule B (Form 990,
990-EZ, or 990-PF).
For Paperwork Reduction Act Notice, see the Instructions
for Form 990, 990-EZ, or 990-PF.
Cat. No. 30613XSchedule B (Form 990) (Rev. 1-2025)
Schedule B (Form 990) (Rev. 1-2025) Page 2
Name of organization
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE
  		Employer identification number
52-2122720
Part I
Contributors (see instructions). Use duplicate copies of Part I if additional space is needed.
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
RESTRICTED
 
 
 
 
  ,    

$ RESTRICTED


(Complete Part II for noncash contributions.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 
 

$  


(Complete Part II for noncash contributions.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 
 

$  


(Complete Part II for noncash contributions.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 
 

$  


(Complete Part II for noncash contributions.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 
 

$  


(Complete Part II for noncash contributions.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 
 

$  


(Complete Part II for noncash contributions.)
Schedule B (Form 990) (Rev. 1-2025)
Schedule B (Form 990) (Rev. 1-2025)
Page 3
Name of organization
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE
  		Employer identification number

52-2122720
Part II
Noncash Property (see instructions). Use duplicate copies of Part II if additional space is needed.
(a)
No. from Part I 		(b)
Description of noncash property given 		(c)
FMV (or estimate)
(See instructions) 		(d)
Date received
 
$    
(a)
No. from Part I 		(b)
Description of noncash property given 		(c)
FMV (or estimate)
(See instructions) 		(d)
Date received
 
$    
(a)
No. from Part I 		(b)
Description of noncash property given 		(c)
FMV (or estimate)
(See instructions) 		(d)
Date received
 
$    
(a)
No. from Part I 		(b)
Description of noncash property given 		(c)
FMV (or estimate)
(See instructions) 		(d)
Date received
 
$    
(a)
No. from Part I 		(b)
Description of noncash property given 		(c)
FMV (or estimate)
(See instructions) 		(d)
Date received
 
$    
(a)
No. from Part I 		(b)
Description of noncash property given 		(c)
FMV (or estimate)
(See instructions) 		(d)
Date received
 
$    
Schedule B (Form 990) (Rev. 1-2025)
Schedule B (Form 990) (Rev. 1-2025)
Page 4
Name of organization
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE
  		Employer identification number

52-2122720
Part III
Exclusively religious, charitable, etc., contributions to organizations described in section 501(c) (7), (8), or (10) that total more than $1,000 for the year from any one contributor. Complete columns (a) through (e) and the following line entry. For organizations completing Part III, enter the total of exclusively religious, charitable, etc., contributions of $1,000 or less for the year. (Enter this information once. See instructions.) $  
Use duplicate copies of Part III if additional space is needed.
(a)
No. from Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
(a)
No. from Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
(a)
No. from Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
(a)
No. from Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
Schedule B (Form 990) (Rev. 1-2025)
Additional Data


Software ID:  
Software Version:  
SCHEDULE C
(Form 990)

Department of the Treasury
Internal Revenue Service
Political Campaign and Lobbying Activities

For Organizations Exempt From Income Tax Under section 501(c) and section 527

right arrow Complete if the organization is described below. right arrow Attach to Form 990 or Form 990-EZ.
right arrowGo to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
2024
Open to Public
Inspection
If the organization answered "Yes" on Form 990, Part IV, Line 3, or Form 990-EZ, Part V, line 46 (Political Campaign Activities), then
Round Bullet Section 501(c)(3) organizations: Complete Parts I-A and B. Do not complete Part I-C.
Round Bullet Section 501(c) (other than section 501(c)(3)) organizations: Complete Parts I-A and C below. Do not complete Part I-B.
Round Bullet Section 527 organizations: Complete Part I-A only.
If the organization answered "Yes" on Form 990, Part IV, Line 4, or Form 990-EZ, Part VI, line 47 (Lobbying Activities), then
Round Bullet Section 501(c)(3) organizations that have filed Form 5768 (election under section 501(h)): Complete Part II-A. Do not complete Part II-B.
Round Bullet Section 501(c)(3) organizations that have NOT filed Form 5768 (election under section 501(h)): Complete Part II-B. Do not complete Part II-A.
If the organization answered "Yes" on Form 990, Part IV, Line 5 (Proxy Tax) (see separate instructions) or Form 990-EZ, Part V, line 35c (Proxy Tax) (see separate instructions), then
Round Bullet Section 501(c)(4), (5), or (6) organizations: Complete Part III.
Name of the organization
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE
 
Employer identification number

52-2122720
Part I-A
Complete if the organization is exempt under section 501(c) or is a section 527 organization.

1
Provide a description of the organization’s direct and indirect political campaign activities in Part IV. See instructions for definition of “political campaign activities."

2
Political campaign activity expenditures. See instructions ....................................................................right arrow
$  
3
Volunteer hours for political campaign activities. See instructions ..................................................................
 

Part I-B
Complete if the organization is exempt under section 501(c)(3).
1
Enter the amount of any excise tax incurred by the organization under section 4955 ................................right arrow
$  
2
Enter the amount of any excise tax incurred by organization managers under section 4955 .......................right arrow
$  
3
If the organization incurred a section 4955 tax, did it file Form 4720 for this year? .........................................
4a
Was a correction made? ......................................................................................................................
b
If "Yes," describe in Part IV.
Part I-C
Complete if the organization is exempt under section 501(c), except section 501(c)(3).
1
Enter the amount directly expended by the filing organization for section 527 exempt function activities ..... right arrow
$  
2
Enter the amount of the filing organization's funds contributed to other organizations for section 527 exempt function activities ............................................................................................................................right arrow

$  
3
Total exempt function expenditures. Add lines 1 and 2. Enter here and on Form 1120-POL, line 17b...........right arrow

$  
4
Did the filing organization file Form 1120-POL for this year? ...................................................................
5
Enter the names, addresses and employer identification number (EIN) of all section 527 political organizations to which the filing
organization made payments. For each organization listed, enter the amount paid from the filing organization’s funds. Also enter the amount of political contributions received that were promptly and directly delivered to a separate political organization, such as a separate segregated fund or a political action committee (PAC). If additional space is needed, provide information in Part IV.
(a) Name (b) Address (c) EIN (d) Amount paid from filing organization's funds. If none, enter -0-. (e) Amount of political contributions received and promptly and directly delivered to a separate political organization. If none, enter -0-.
1
2
3
4
5
6
For Paperwork Reduction Act Notice, see the instructions for Form 990.
Cat. No. 50084S
Schedule C (Form 990) 2024

Schedule C (Form 990) 2024
Page 2
Part II-A
Complete if the organization is exempt under section 501(c)(3) and filed Form 5768 (election under section 501(h)).
A Check right arrowexpenses, and share of excess lobbying expenditures).
B Check right arrow
Limits on Lobbying Expenditures
(The term "expenditures" means amounts paid or incurred.) 		(a) Filing
organization's
totals 		(b) Affiliated group totals
1a Total lobbying expenditures to influence public opinion (grass roots lobbying) ...................... 3,586  
b Total lobbying expenditures to influence a legislative body (direct lobbying) ........................ 11,586  
c Total lobbying expenditures (add lines 1a and 1b) ............................................................ 15,172  
d Other exempt purpose expenditures ............................................................................... 12,827,374  
e Total exempt purpose expenditures (add lines 1c and 1d) .................................................. 12,842,546  
f Lobbying nontaxable amount. Enter the amount from the following table in both
columns.		 792,127  
If the amount on line 1e, column (a) or (b) is:The lobbying nontaxable amount is:
Not over $500,00020% of the amount on line 1e.
Over $500,000 but not over $1,000,000$100,000 plus 15% of the excess over $500,000.
Over $1,000,000 but not over $1,500,000$175,000 plus 10% of the excess over $1,000,000.
Over $1,500,000 but not over $17,000,000$225,000 plus 5% of the excess over $1,500,000.
Over $17,000,000$1,000,000.
g Grassroots nontaxable amount (enter 25% of line 1f) ................................................. 198,032  
h Subtract line 1g from line 1a. If zero or less, enter -0-. ................................................ 0  
i Subtract line 1f from line 1c. If zero or less, enter -0-. ................................................ 0  
j If there is an amount other than zero on either line 1h or line 1i, did the organization file Form 4720 reporting
section 4911 tax for this year? ...................................................................................................................

4-Year Averaging Period Under Section 501(h)
(Some organizations that made a section 501(h) election do not have to complete all of the five
columns below. See the separate instructions for lines 2a through 2f.)
Lobbying Expenditures During 4-Year Averaging Period
Calendar year (or fiscal year
beginning in) 		(a) 2021 (b) 2022 (c) 2023 (d) 2024 (e) Total
2a Lobbying nontaxable amount 629,867 742,201 757,339 792,127 2,921,534
b Lobbying ceiling amount
(150% of line 2a, column(e)) 		4,382,301
c Total lobbying expenditures 19,687 20,584 20,400 15,172 75,843
d Grassroots nontaxable amount 157,467 185,550 189,335 198,032 730,384
e Grassroots ceiling amount
(150% of line 2d, column (e))		 1,095,576
f Grassroots lobbying expenditures 3,570 3,567 3,700 3,586 14,423
Schedule C (Form 990) 2024


Schedule C (Form 990) 2024
Page 3
Part II-B
Complete if the organization is exempt under section 501(c)(3) and has NOT filed Form 5768 (election under section 501(h)).
For each "Yes" response on lines 1a through 1i below, provide in Part IV a detailed description of the lobbying activity.
(a)
Yes
No
(b)
Amount
1
During the year, did the filing organization attempt to influence foreign, national, state or local legislation, including any attempt to influence public opinion on a legislative matter or referendum, through the use of:
a
Volunteers? ...........................................................................................................
 
 
b
Paid staff or management (include compensation in expenses reported on lines 1c through 1i)? ........
 
 
c
Media advertisements? ...................................................................................................
 
 
 
d
Mailings to members, legislators, or the public? .............................................................................
 
 
 
e
Publications, or published or broadcast statements? ...........................................................
 
 
 
f
Grants to other organizations for lobbying purposes? ..........................................................
 
 
 
g
Direct contact with legislators, their staffs, government officials, or a legislative body? .......................
 
 
 
h
Rallies, demonstrations, seminars, conventions, speeches, lectures, or any similar means? ..................
 
 
 
i
Other activities? ...................................................................................................................
 
 
 
j
Total. Add lines 1c through 1i ....................................................................................................
 
2a
Did the activities in line 1 cause the organization to be not described in section 501(c)(3)? .....
 
 
b
If "Yes," enter the amount of any tax incurred under section 4912 ...........................................
 
c
If "Yes," enter the amount of any tax incurred by organization managers under section 4912 ...................
 
d
If the filing organization incurred a section 4912 tax, did it file Form 4720 for this year? ........................
 
 
Part III-A
Complete if the organization is exempt under section 501(c)(4), section 501(c)(5), or section 501(c)(6).
Yes
No
1
Were substantially all (90% or more) dues received nondeductible by members? ...............................................
1
 
 
2
Did the organization make only in-house lobbying expenditures of $2,000 or less? ............................................
2
 
 
3
Did the organization agree to carry over lobbying and political expenditures from the prior year? .................................
3
 
 
Part III-B
Complete if the organization is exempt under section 501(c)(4), section 501(c)(5), or section 501(c)(6) and if either (a) BOTH Part III-A, lines 1 and 2, are answered "No" OR (b) Part III-A, line 3, is answered “Yes."
1
Dues, assessments and similar amounts from members ......................................................................
1
 
2
Section 162(e) nondeductible lobbying and political expenditures (do not include amounts of political expenses for which the section 527(f) tax was paid).
a
Current year .............................................................................................................................
2a
 
b
Carryover from last year ............................................................................................................
2b
 
c
Total ...........................................................................................................................................
2c
 
3
Aggregate amount reported in section 6033(e)(1)(A) notices of nondeductible section 162(e) dues .
3
 
4
If notices were sent and the amount on line 2c exceeds the amount on line 3, what portion of the excess does the organization agree to carryover to the reasonable estimate of nondeductible lobbying and political expenditure next year? ......................................................................................................................
4
 
5
Taxable amount of lobbying and political expenditures. See Instructions .........................................
5
 
Part IV
Supplemental Information
Provide the descriptions required for Part l-A, line 1; Part l-B, line 4; Part l-C, line 5; Part II-A (affiliated group list); Part II-A, lines 1 and 2 (see instructions), and Part ll-B, line 1. Also, complete this part for any additional information.
Return Reference Explanation
Schedule C (Form 990) 2024


Additional Data


Software ID:  
Software Version:  

SCHEDULE D
(Form 990)

Department of the Treasury
Internal Revenue Service
Supplemental Financial Statements
right arrow Complete if the organization answered "Yes," on Form 990,
Part IV, line 6, 7, 8, 9, 10, 11a, 11b, 11c, 11d, 11e, 11f, 12a, or 12b.
right arrow Attach to Form 990.
right arrow Go to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
Open to Public Inspection
Name of the organization
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE
 
Employer identification number

52-2122720
Part I
Organizations Maintaining Donor Advised Funds or Other Similar Funds or Accounts. Complete if the organization answered "Yes" on Form 990, Part IV, line 6.
(a) Donor advised funds (b) Funds and other accounts
1 Total number at end of year .........    
2 Aggregate value of contributions to (during year)    
3 Aggregate value of grants from (during year)    
4 Aggregate value at end of year ........    
5
Did the organization inform all donors and donor advisors in writing that the assets held in donor advised funds are the organization’s property, subject to the organization’s exclusive legal control? ............
6
Did the organization inform all grantees, donors, and donor advisors in writing that grant funds can be used only for charitable purposes and not for the benefit of the donor or donor advisor, or for any other purpose conferring impermissible private benefit? ...................................
Part II
Conservation Easements.
Complete if the organization answered "Yes" on Form 990, Part IV, line 7.
1
Purpose(s) of conservation easements held by the organization (check all that apply).
2
Complete lines 2a through 2d if the organization held a qualified conservation contribution in the form of a conservation easement on the last day of the tax year.
Held at the End of the Year
a Total number of conservation easements ...................... 2a  
b Total acreage restricted by conservation easements .................... 2b  
c Number of conservation easements on a certified historic structure included in (a) ..... 2c  
d Number of conservation easements included in (c) acquired after July 25, 2006, and not on a historic structure listed in the National Register ... 2d  
3
Number of conservation easements modified, transferred, released, extinguished, or terminated by the organization during the
tax year right arrow  
4
Number of states where property subject to conservation easement is located right arrow  
5
Does the organization have a written policy regarding the periodic monitoring, inspection, handling of violations, and enforcement of the conservation easements it holds? ............
6
Staff and volunteer hours devoted to monitoring, inspecting, handling of violations, and enforcing conservation easements during the year
right arrow  
7
Amount of expenses incurred in monitoring, inspecting, handling of violations, and enforcing conservation easements during the year
right arrow $  
8
Does each conservation easement reported on line 2(d) above satisfy the requirements of section 170(h)(4)(B)(i) and section 170(h)(4)(B)(ii)? .............................
9
In Part XIII, describe how the organization reports conservation easements in its revenue and expense statement, and
balance sheet, and include, if applicable, the text of the footnote to the organization’s financial statements that describes
the organization’s accounting for conservation easements.
Part III
Organizations Maintaining Collections of Art, Historical Treasures, or Other Similar Assets.
Complete if the organization answered "Yes" on Form 990, Part IV, line 8.
1a
If the organization elected, as permitted under FASB ASC 958, not to report in its revenue statement and balance sheet works of art, historical treasures, or other similar assets held for public exhibition, education, or research in furtherance of public service, provide, in Part XIII, the text of the footnote to its financial statements that describes these items.
b
If the organization elected, as permitted under FASB ASC 958, to report in its revenue statement and balance sheet works of art, historical treasures, or other similar assets held for public exhibition, education, or research in furtherance of public service, provide the following amounts relating to these items:
(i)
Revenue included on Form 990, Part VIII, line 1 .........................right arrow $  
(ii)
Assets included in Form 990, Part X ...............................right arrow $  
2
If the organization received or held works of art, historical treasures, or other similar assets for financial gain, provide the
following amounts required to be reported under FASB ASC 958 relating to these items:
a
Revenue included on Form 990, Part VIII, line 1 ..........................right arrow $  
b
Assets included in Form 990, Part X ...............................right arrow $  
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 52283D
Schedule D (Form 990) (Rev. 1-2025)

Schedule D (Form 990) (Rev. 1-2025)
Page 2
Part III
Organizations Maintaining Collections of Art, Historical Treasures, or Other Similar Assets (continued)
3
Using the organization’s acquisition, accession, and other records, check any of the following that are a significant use of its collection items (check all that apply):
a
d
b
e
 
c
4
Provide a description of the organization’s collections and explain how they further the organization’s exempt purpose in
Part XIII.
5
During the year, did the organization solicit or receive donations of art, historical treasures or other similar
assets to be sold to raise funds rather than to be maintained as part of the organization’s collection?...
Part IV
Escrow and Custodial Arrangements. Complete if the organization answered "Yes" on Form 990, Part IV, line 9, or reported an amount on Form 990, Part X, line 21.
1a
Is the organization an agent, trustee, custodian or other intermediary for contributions or other assets not
included on Form 990, Part X? ....................................
b If "Yes," explain the arrangement in Part XIII and complete the following table: Amount
c Beginning balance ............................. 1c  
d Additions during the year ............................ 1d  
e Distributions during the year .......................... 1e  
f Ending balance ................................ 1f  
2a
Did the organization include an amount on Form 990, Part X, line 21, for escrow or custodial account liability? ...
b
If "Yes," explain the arrangement in Part XIII. Check here if the explanation has been provided in Part XIII ....
Part V
Endowment Funds.
Complete if the organization answered "Yes" on Form 990, Part IV, line 10.
(a) Current year (b) Prior year (c) Two years back (d) Three years back (e) Four years back
1a Beginning of year balance ....          
b Contributions ...          
c Net investment earnings, gains, and losses          
d Grants or scholarships ...          
e Other expenditures for facilities
and programs ... 		         
f Administrative expenses ....          
g End of year balance ......          
2
Provide the estimated percentage of the current year end balance (line 1g, column (a)) held as:
a
Board designated or quasi-endowment right arrow  
b
Permanent endowment right arrow  
c
Term endowment right arrow  
The percentages on lines 2a, 2b, and 2c should equal 100%.
3a
Are there endowment funds not in the possession of the organization that are held and administered for the
organization by:

Yes
No
(i) Unrelated organizations .................
3a(i)
 
 
(ii) Related organizations .................
3a(ii)
 
 
b
If "Yes" on 3a(ii), are the related organizations listed as required on Schedule R? .........
3b
 
 
4
Describe in Part XIII the intended uses of the organization's endowment funds.
Part VI
Land, Buildings, and Equipment.
Complete if the organization answered "Yes" on Form 990, Part IV, line 11a. See Form 990, Part X, line 10.
Description of property (a) Cost or other basis
(investment) 		(b) Cost or other basis (other) (c) Accumulated depreciation (d) Book value
1a Land .....      
b Buildings ....        
c Leasehold improvements        
d Equipment ....        
e Other .....        
Total. Add lines 1a through 1e. (Column (d) must equal Form 990, Part X, column (B), line 10(c).)..right arrow 0
Schedule D (Form 990) (Rev. 1-2025)

Schedule D (Form 990) (Rev. 1-2025)
Page 3
Part VII
Investments - Other Securities.
Complete if the organization answered "Yes" on Form 990, Part IV, line 11b. See Form 990, Part X, line 12.
(a) Description of security or category
(including name of security)		 (b) Book value (c) Method of valuation:
Cost or end-of-year market value
(1) Financial derivatives.........    
(2) Closely-held equity interests........    
(3) Other
(A) ISHARES CORE S&P 500 EFT		 432,680 F
(B)
(C)
(D)
(E)
(F)
(G)
(H)
Total. (Column (b) must equal Form 990, Part X, col. (B) line 12.)right arrow 432,680
Part VIII
Investments - Program Related. Complete if the organization answered 'Yes' on Form 990, Part IV, line 11c. See Form 990, Part X, line 13.
(a) Description of investment (b) Book value (c) Method of valuation:
Cost or end-of-year market value
(1)
(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 13.)right arrow  
Part IX
Other Assets.
Complete if the organization answered 'Yes' on Form 990, Part IV, line 11d. See Form 990, Part X, line 15.
(a) Description (b) Book value
(1)
(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 15.)...........right arrow  
Part X
Other Liabilities.
Complete if the organization answered 'Yes' on Form 990, Part IV, line 11e or 11f. See Form 990, Part X, line 25.
1.(a) Description of liability (b) Book value
(1) Federal income taxes  
LEASE LIABILITIES, CURRENT PORTION 49,940








Total. (Column (b) must equal Form 990, Part X, col.(B) line 25.)right arrow 49,940
2. Liability for uncertain tax positions. In Part XIII, provide the text of the footnote to the organization's financial statements that reports the organization's liability for uncertain tax positions under FIN 48 (ASC 740). Check here if the text of the footnote has been provided in Part XIII
Schedule D (Form 990) (Rev. 1-2025)

Schedule D (Form 990) (Rev. 1-2025)
Page 4
Part XI Reconciliation of Revenue per Audited Financial Statements With Revenue per Return. Complete if the organization answered 'Yes' on Form 990, Part IV, line 12a.
1 Total revenue, gains, and other support per audited financial statements ....... 1  
2 Amounts included on line 1 but not on Form 990, Part VIII, line 12:
a Net unrealized gains (losses) on investments .... 2a  
b Donated services and use of facilities ......... 2b  
c Recoveries of prior year grants ........... 2c  
d Other (Describe in Part XIII.) ........... 2d  
e Add lines 2a through 2d ..................... 2e  
3 Subtract line 2e from line 1.................. 3  
4 Amounts included on Form 990, Part VIII, line 12, but not on line 1:
a Investment expenses not included on Form 990, Part VIII, line 7b . 4a  
b Other (Describe in Part XIII.) ........... 4b  
c Add lines 4a and 4b.................... 4c  
5 Total revenue. Add lines 3 and 4c. (This must equal Form 990, Part I, line 12.) ...... 5  
Part XII Reconciliation of Expenses per Audited Financial Statements With Expenses per Return. Complete if the organization answered 'Yes' on Form 990, Part IV, line 12a.
1 Total expenses and losses per audited financial statements ........... 1  
2 Amounts included on line 1 but not on Form 990, Part IX, line 25:
a Donated services and use of facilities ......... 2a  
b Prior year adjustments ............ 2b  
c Other losses ................ 2c  
d Other (Describe in Part XIII.) ........... 2d  
e Add lines 2a through 2d.................... 2e  
3 Subtract line 2e from line 1................... 3  
4 Amounts included on Form 990, Part IX, line 25, but not on line 1:
a Investment expenses not included on Form 990, Part VIII, line 7b .. 4a  
b Other (Describe in Part XIII.) ........... 4b  
c Add lines 4a and 4b..................... 4c  
5 Total expenses. Add lines 3 and 4c. (This must equal Form 990, Part I, line 18.) ...... 5  
Part XIII
Supplemental Information
Provide the descriptions required for Part II, lines 3, 5, and 9; Part III, lines 1a and 4; Part lV, lines 1b and 2b; Part V, line 4; Part X, line 2; Part XI, lines 2d and 4b; and Part XII, lines 2d and 4b. Also complete this part to provide any additional information.
Return Reference Explanation
PART X, LINE 2: THE INTERNAL REVENUE SERVICE HAS CLASSIFIED FARA AS EXEMPT FROM FEDERAL INCOME TAXES UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE. FARA EUROPE WAS FORMED AS A NON-PROFIT ENTITY UNDER THE LAWS OF THE NETHERLANDS AND IS EXEMPT FROM INCOME TAXES. ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES CLARIFIES THE ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES RECOGNIZED IN AN ENTERPRISE'S FINANCIAL STATEMENTS. MANAGEMENT HAS ANALYZED THE TAX POSITIONS TAKEN BY THE ORGANIZATION, AND HAS CONCLUDED THAT AS OF DECEMBER 31, 2024, THERE ARE NO UNCERTAIN TAX POSITIONS TAKEN OR EXPECTED TO BE TAKEN THAT WOULD REQUIRE RECOGNITION OF A LIABILITY OR DISCLOSURE IN THE FINANCIAL STATEMENTS. THE ORGANIZATION RECOGNIZES ACCRUED INTEREST AND PENALTIES ASSOCIATED WITH UNCERTAIN TAX POSITIONS, IF ANY. THERE WERE NO INCOME TAX RELATED INTEREST OR PENALTIES RECORDED FOR THE YEAR ENDED DECEMBER 31, 2024.
Schedule D (Form 990) (Rev. 1-2025)


Additional Data


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SCHEDULE F(Form 990)
(Rev. January 2025)
Department of the Treasury
Internal Revenue Service
Statement of Activities Outside the United States
Right arrow Complete if the organization answered "Yes" to Form 990, Part IV, line 14b, 15, or 16.Right arrow Attach to Form 990.Right arrow Go to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
Open to Public Inspection
Name of the organization
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE
 
Employer identification number

52-2122720
Part I
General Information on Activities Outside the United States. Complete if the organization answered "Yes" on Form 990, Part IV, line 14b.
1
For grantmakers. Does the organization maintain records to substantiate the amount of its grants and
other assistance, the grantees’ eligibility for the grants or assistance, and the selection criteria used
to award the grants or assistance? . . . . . . . . . . . . . . . . . . . . . . . . .
2
For grantmakers. Describe in Part V the organization’s procedures for monitoring the use of its grants and other assistance outside the United States.
3
Activites per Region. (The following Part I, line 3 table can be duplicated if additional space is needed.)
(a) Region (b) Number of offices in the region (c) Number of employees, agents, and independent contractors in the region (d) Activities conducted in region (by type) (such as, fundraising, program services, investments, grants to recipients located in the region) (e) If activity listed in (d) is a program service, describe specific type of
service(s) in the region		 (f) Total expenditures
for and investments
in the region
EUROPE 0 1 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 1,804,190
EAST ASIA AND THE PACIFIC 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 970,045
SOUTH AMERICA 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 93,500
CANADA 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 427,972
           
           
           
           
           
           
           
           
           
           
           
           
           
3a Sub-total .... 0 1 3,295,707
b Total from continuation sheets to Part I ... 0 0 0
c Totals (add lines 3a and 3b) 0 1 3,295,707
For Paperwork Reduction Act Notice, see the Instructions for Form 990.Cat. No. 50082W Schedule F (Form 990) (Rev. 1-2025)
Schedule F (Form 990) (Rev. 1-2025)
Page 2
Part II
Grants and Other Assistance to Organizations or Entities Outside the United States. Complete if the organization answered "Yes" on Form 990, Part IV, line 15, for any recipient who received more than $5,000. Part II can be duplicated if additional space is needed.
1 (a) Name of organization (b) IRS code section
and EIN (if applicable)		 (c) Region (d) Purpose of
grant 		(e) Amount of
cash grant 		(f) Manner of
cash
disbursement 		(g) Amount
of noncash
assistance 		(h) Description
of noncash
assistance 		(i) Method of
valuation
(book, FMV,
appraisal, other)
EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 417,769 WIRE 0    
EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 181,411 WIRE 0    
EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 30,000 WIRE 0    
EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 77,800 WIRE 0    
EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 98,960 WIRE 0    
EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 7,736 WIRE 0    
EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 156,369 WIRE 0    
EUROPE MEDICAL RESEARCH 90,900 WIRE 0    
EUROPE MEDICAL RESEARCH 67,850 WIRE 0    
EUROPE MEDICAL RESEARCH 42,600 WIRE 0    
EUROPE MEDICAL RESEARCH 125,000 WIRE 0    
EUROPE MEDICAL RESEARCH 196,928 WIRE 0    
EUROPE MEDICAL RESEARCH 80,000 WIRE 0    
EUROPE MEDICAL RESEARCH 120,240 WIRE 0    
EUROPE MEDICAL RESEARCH 88,777 WIRE 0    
EUROPE MEDICAL RESEARCH 104,068 WIRE 0    
EUROPE MEDICAL RESEARCH 85,500 WIRE 0    
EUROPE MEDICAL RESEARCH 124,923 WIRE 0    
EUROPE MEDICAL RESEARCH 130,750 WIRE 0    
EUROPE MEDICAL RESEARCH 407,105 WIRE 0    
EUROPE MEDICAL RESEARCH 139,548 WIRE 0    
NORTH AMERICA - CANADA, MEXICO (NOT UNITED STATES) MEDICAL RESEARCH 7,000 WIRE 0    
NORTH AMERICA - CANADA, MEXICO (NOT UNITED STATES) MEDICAL RESEARCH 10,913 WIRE 0    
NORTH AMERICA - CANADA, MEXICO (NOT UNITED STATES) MEDICAL RESEARCH 53,600 WIRE 0    
NORTH AMERICA - CANADA, MEXICO (NOT UNITED STATES) MEDICAL RESEARCH 356,459 WIRE 0    
SOUTH AMERICA- ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR MEDICAL RESEARCH 58,500 WIRE 0    
SOUTH AMERICA- ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR MEDICAL RESEARCH 35,000 WIRE 0    
2 Enter total number of recipient organizations listed above that are recognized as charities by the foreign country, recognized as tax-exempt by the IRS, or for which the grantee or counsel has provided a section 501(c)(3) equivalency letter .......MediumBullet
25
3 Enter total number of other organizations or entities .......................MediumBullet
2
Schedule F (Form 990) (Rev. 1-2025)
Schedule F (Form 990) (Rev. 1-2025)Page 3
Part III
Grants and Other Assistance to Individuals Outside the United States. Complete if the organization answered "Yes" on Form 990, Part IV, line 16.
Part III can be duplicated if additional space is needed.
(a) Type of grant or assistance (b) Region (c) Number of recipients (d) Amount of
cash grant 		(e) Manner of cash
disbursement 		(f) Amount of
noncash
assistance 		(g) Description
of noncash
assistance 		(h) Method of
valuation
(book, FMV,
appraisal, other)
FARA FELLOWS AWARDS EUROPE (INCLUDING ICELAND & GREENLAND) 3 40,050 WIRE      
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
Schedule F (Form 990) (Rev. 1-2025)
Schedule F (Form 990) (Rev. 1-2025)
Page 4
Part IV
Foreign Forms
1 Was the organization a U.S. transferor of property to a foreign corporation during the tax year? If "Yes," the organization may be required to file Form 926, Return by a U.S. Transferor of Property to a Foreign Corporation (see Instructions for Form 926). . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
2 Did the organization have an interest in a foreign trust during the tax year? If "Yes," the organization may be required to separately file Form 3520, Annual Return to Report Transactions with Foreign Trusts and Receipt of Certain Foreign Gifts, and/or Form 3520-A, Annual Information Return of Foreign Trust With a U.S. Owner (see Instructions for Forms 3520 and 3520-A; don't file with Form 990). . . . . . . . . . . . . . . . . . . . . . . .
3 Did the organization have an ownership interest in a foreign corporation during the tax year? If "Yes," the organization may be required to file Form 5471, Information Return of U.S. Persons with Respect to Certain Foreign Corporations. (see Instructions for Form 5471). . . . . . . . . . . . . . . . . . . . . . . . . . . .
4 Was the organization a direct or indirect shareholder of a passive foreign investment company or a qualified electing fund during the tax year? If “Yes,” the organization may be required to file Form 8621, Information Return by a Shareholder of a Passive Foreign Investment Company or Qualified Electing Fund. (see Instructions for Form 8621) .
5 Did the organization have an ownership interest in a foreign partnership during the tax year? If "Yes," the organization may be required to file Form 8865, Return of U.S. Persons with Respect to Certain Foreign Partnerships (see Instructions for Form 8865). . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
6 Did the organization have any operations in or related to any boycotting countries during the tax year? If "Yes," the organization may be required to separately file Form 5713, International Boycott Report (see Instructions for Form 5713; don't file with Form 990).. . . . . . . . . . . . . . . . . . . . . . . . . . . .
Schedule F (Form 990) (Rev. 1-2025)
Schedule F (Form 990) (Rev. 1-2025)
Page 5
Part V
Supplemental Information
Provide the information required by Part I, line 2 (monitoring of funds); Part I, line 3, column (f) (accounting method; amounts of investments vs. expenditures per region); Part II, line 1 (accounting method); Part III (accounting method); and Part III, column (c) (estimated number of recipients), as applicable. Also complete this part to provide any additional information. See instructions.
ReturnReference Explanation
PART I, LINE 2: GRANTS ARE REVIEWED BY INDEPENDENT SCIENTIFIC ADVISORS AND APPROVED BY BOARD. ONCE GRANTS ARE AWARDED THE ORGANIZATION REQUIRES REGULAR RESEARCH AND FINANCIAL REPORTS FROM THE INSTITUTIONS. FARA INSTITUTED A PROGRAM TO SUPPORT YOUNG EMERGING SCIENTISTS (UP TO SIX PER YEAR) WITH THE FARA FELLOWS AWARD. APPLICATIONS ARE SUBMITTED BY THE FELLOWS AND THEIR MENTORS AND ARE REVIEWED BY INDEPENDENT SCIENTIFIC ADVISORS AND APPROVED BY THE BOARD.
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
Schedule F (Form 990) (Rev. 1-2025)
Additional Data


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SCHEDULE G (Form 990)
(Rev. January 2025)
Department of the Treasury
Internal Revenue Service
Supplemental Information Regarding
Fundraising or Gaming Activities
Complete if the organization answered "Yes" on Form 990, Part IV, lines 17, 18, or 19, or if the organization entered more than $15,000 on Form 990-EZ, line 6a. right arrowAttach to Form 990 or Form 990-EZ.
right arrowGo to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
Open to Public Inspection
Name of the organization
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE
 
Employer identification number

52-2122720
Part I
Fundraising Activities.Complete if the organization answered "Yes" on Form 990, Part IV, line 17.
Form 990-EZ filers are not required to complete this part.
1
Indicate whether the organization raised funds through any of the following activities. Check all that apply.
a e
b f
c g
d
2a
Did the organization have a written or oral agreement with any individual (including officers, directors, trustees
or key employees listed in Form 990, Part VII) or entity in connection with professional fundraising services?
b
If "Yes," list the 10 highest paid individuals or entities (fundraisers) pursuant to agreements under which the fundraiser is
to be compensated at least $5,000 by the organization.


(i) Name and address of individual
or entity (fundraiser) 		(ii) Activity (iii) Did fundraiser have custody or control of contributions? (iv) Gross receipts
from activity 		(v) Amount paid to
(or retained by)
fundraiser listed in
col. (i) 		(vi) Amount paid to
(or retained by)
organization
Yes No
             
             
             
             
             
             
             
             
             
             
Total . . . . . . . . . . . . . . . . . . . . right arrow      
3
List all states in which the organization is registered or licensed to solicit contributions or has been notified it is exempt from registration or licensing.
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.
Cat. No. 50083H
Schedule G (Form 990) (Rev. 1-2025)
Schedule G (Form 990) (Rev. 1-2025)
Page 2
Part II
Fundraising Events. Complete if the organization answered "Yes" on Form 990, Part IV, line 18, or reported more than $15,000 of fundraising event contributions and gross income on Form 990-EZ, lines 1 and 6b. List events with gross receipts greater than $5,000.




VerticalRevenue
(a) Event #1

FARA ENERGY BALL
(event type) 		(b) Event #2

RIDEATAXIA PHILA
(event type) 		(c) Other events

16
(total number) 		(d) Total events
(add col. (a) through col. (c))

1
Gross receipts . . . . .
1,651,351
578,416
1,781,198
4,010,965

2
Less: Contributions . . . .
1,153,631
562,366
1,646,183
3,362,180
3 Gross income (line 1 minus
line 2) . . . . . .
497,720
16,050
135,015
648,785



VerticalDirectExpenses
4 Cash prizes . . . . .        
5 Noncash prizes . . . .        
6 Rent/facility costs . . . . 144,106 3,206 16,028 163,340
7 Food and beverages . . .        
8 Entertainment . . . . 10,500     10,500
9 Other direct expenses . . . 416,430 107,521 504,964 1,028,915
10 Direct expense summary. Add lines 4 through 9 in column (d) . . . . . . . . . . right arrow 1,202,755
11 Net income summary. Subtract line 10 from line 3, column (d). . . . . . . . . . right arrow -553,970
Part III
Gaming. Complete if the organization answered "Yes" on Form 990, Part IV, line 19, or reported more than $15,000 on Form 990-EZ, line 6a.
VerticalRevenue
(a) Bingo (b) Pull tabs/Instant
bingo/progressive bingo 		(c) Other gaming (d) Total gaming (add col.(a) through col.(c))

1
Gross revenue . . . . .
 
 
 
 
VerticalDirectExpenses

2
Cash prizes . . . . .
 
 
 
 

3
Noncash prizes . . . .
 
 
 
 

4
Rent/facility costs . . . .
 
 
 
 

5
Other direct expenses . . .
 
 
 
 


6

Volunteer labor . . . .
%
%
%


7
Direct expense summary. Add lines 2 through 5 in column (d) . . . . . . . . . . right arrow
 

8
Net gaming income summary. Subtract line 7 from line 1, column (d). . . . . . . . . right arrow
 

9
Enter the state(s) in which the organization conducts gaming activities:
a
Is the organization licensed to conduct gaming activities in each of these states? . . . . . . . .
YesNo
b
If "No," explain:
 
10a
Were any of the organization's gaming licenses revoked, suspended or terminated during the tax year? . . .
YesNo
b
If "Yes," explain:
 
Schedule G (Form 990) (Rev. 1-2025)
Schedule G (Form 990) (Rev. 1-2025)
Page 3
11
Does the organization conduct gaming activities with nonmembers? . . . . . . . . . . .
YesNo
12
Is the organization a grantor, beneficiary or trustee of a trust or a member of a partnership or other entity
formed to administer charitable gaming? . . . . . . . . . . . . . . . . .
YesNo
13
Indicate the percentage of gaming activity conducted in:
a
The organization's facility . . . . . . . . . . . . . . . . . .
13a
%
b
An outside facility . . . . . . . . . . . . . . . . . . . .
13b
%
14
Enter the name and address of the person who prepares the organization's gaming/special events books and records:
Name right arrow
FELICIA DEROSA
Address right arrow
533 W UWCHLAN AVENUE   DOWNINGTOWN, PA19335
15a
Does the organization have a contract with a third party from whom the organization receives gaming
revenue? . . . . . . . . . . . . . . . . . . . . . . . .
b
If "Yes," enter the amount of gaming revenue received by the organization right arrow $   and the
amount of gaming revenue retained by the third party right arrow $   .
c
If "Yes," enter name and address of the third party:
Name right arrow
Address right arrow
16
Gaming manager information:
Name right arrow
Gaming manager compensation right arrow $  
Description of services provided right arrow
 
17
Mandatory distributions:
a
Is the organization required under state law to make charitable distributions from the gaming proceeds to
retain the state gaming license? . . . . . . . . . . . . . . . . . . .
b
Enter the amount of distributions required under state law distributed to other exempt organizations or spent
in the organization's own exempt activities during the tax year right arrow$  
Part IV
Supplemental Information. Provide the explanations required by Part I, line 2b, columns (iii) and (v); and Part III, lines 9, 9b, 10b, 15b, 15c, 16, and 17b, as applicable. Also provide any additional information. See instructions.
Return Reference Explanation
Schedule G (Form 990) (Rev. 1-2025)
Additional Data


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Schedule I
(Form 990)
(Rev. January 2025)
Department of the Treasury
Internal Revenue Service
Grants and Other Assistance to Organizations,
Governments and Individuals in the United States
Complete if the organization answered "Yes," on Form 990, Part IV, line 21 or 22.
lBullet Attach to Form 990.
lBullet Go to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
Open to Public
Inspection
Name of the organization
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE
 
Employer identification number
52-2122720
Part I
General Information on Grants and Assistance
1
Does the organization maintain records to substantiate the amount of the grants or assistance, the grantees' eligibility for the grants or assistance, and
the selection criteria used to award the grants or assistance? ........................
2
Describe in Part IV the organization's procedures for monitoring the use of grant funds in the United States.
Part II
Grants and Other Assistance to Domestic Organizations and Domestic Governments. Complete if the organization answered "Yes" on Form 990, Part IV, line 21, for any recipient
that received more than $5,000. Part II can be duplicated if additional space is needed.
(a) Name and address of organization
or government		 (b) EIN (c) IRC section
(if applicable)		 (d) Amount of cash grant (e) Amount of non-cash
assistance		 (f) Method of valuation
(book, FMV, appraisal,
other)		 (g) Description of
noncash assistance		 (h) Purpose of grant
or assistance
(1) BOARD REGENTS OF THE UNIVERSITY OF OKLAHOMA
FIVE PARTNERS PLACE STE 3100 201
STEPHENSON PARKWAY
NORMAN,OK73019 		73-1377584 501(C)(3) 116,813 0     MEDICAL RESEARCH
(2) BOSTON COLLEGE
140 COMMONWEALTH AVE
CHESTNUT HILL,MA02467 		04-2103545 501(C)(3) 38,000 0     MEDICAL RESEARCH
(3) CALIFORNIA INSTITUTE OF TECHNOLOGY
1200 EAST CALIFORNIA BLVD
PASADENA,CA91125 		95-1643307 501(C)(3) 100,000 0     MEDICAL RESEARCH
(4) CHILDREN'S HOSPITAL OF PHILADELPHIA RESEARCH INSTITUTE
34TH ST CIVIC CENTER BLVD
PHILADELPHIA,PA19104 		23-1352166 501(C)(3) 713,919 0     MEDICAL RESEARCH
(5) COLUMBIA UNIVERSITY
615 W 131ST STREET 6TH FLOOR MC8725
NEW YORK,NY10027 		13-5598093 501(C)(3) 125,000 0     MEDICAL RESEARCH
(6) EMORY UNIVERSITY
1390 OXFORD ROAD NE 3RD FLOOR
ATLANTA,GA30322 		58-0566256 501(C)(3) 5,991 0     MEDICAL RESEARCH
(7) EPICRISPR BIOTECHNOLOGIES INC
7000 SHORELINE COURT SUITE 100
SOUTH SAN FRANCISCO,CA94080 		82-4177431   100,000 0     MEDICAL RESEARCH
(8) JOHN HOPKINS UNIVERSITY
733 N BROADWAY SUITE 117
BALTIMORE,MD21205 		52-0595110 501(C)(3) 86,175 0     MEDICAL RESEARCH
(9) MASSACHUSETTS GENERAL HOSPITAL
55 FRUIT STREET
BOSTON,MA02114 		04-3230035 501(C)(3) 313,988 0     MEDICAL RESEARCH
(10) NATIONWIDE CHILDREN'S HOSPITAL
700 CHILDRENS DR
COLUMBUS,OH43205 		31-1036372 501(C)(3) 9,012 0     MEDICAL RESEARCH
(11) REGENTS OF THE UNIVERSITY OF MINNESOTA
600 MCNAMARA ALUMNI CENTER SE 200
SE OAK ST
MINNEAPOLIS,MN55455 		41-6007513 501(C)(3) 339,615 0     MEDICAL RESEARCH
(12) RGENTA THERAPEUTICS INC
300 TRADECENTER DR SUITE 6600
WOBURNMA,MA01801 		23-7094113   125,000 0     MEDICAL RESEARCH
(13) ST JUDE CHILDREN'S RESEARCH HOSPITAL
262 DANNY THOMAS PLACE
MEMPHIS,TN38105 		62-0646012 501(C)(3) 67,138 0     MEDICAL RESEARCH
(14) STANFORD UNIVERSITY
450 JANE STANFORD WAY
STANFORD,CA94305 		94-1156365 501(C)(3) 250,000 0     MEDICAL RESEARCH
(15) STEALTH BIOTHERAPEUTICS INC
123 HIGHLAND AVE STE 201
NEEDHAM,MA02494 		26-1512085   185,182 0     MEDICAL RESEARCH
(16) THE BROAD INSTITUTE
415 MAIN STREET
CAMBRIDGE,MA02142 		26-3428781 501(C)(3) 1,945,086 0     MEDICAL RESEARCH
(17) THE HIGHEST ROAD FILM LLC
1023 PHEASANT RIDGE DRIVE
GRAPEVINE,TX76051 		99-2207841   80,000 0     DISEASE AWARENESS
(18) THE NATIONAL CANCER INSTITUTE
BUILDING 31 ROOM 11A-16 9000
ROCKVILLE PIKE
BETHESDA,MD20892 		01-5208581 501(C)(3) 124,922 0     MEDICAL RESEARCH
(19) THE REGENTS OF THE UNIVERSITY OF CALIFORNIA DAVIS
ONE SHIELDS AVE
DAVIS,CA95616 		94-6036494 501(C)(3) 150,000 0     MEDICAL RESEARCH
(20) THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN DIEGO
9500 GILMAN DRIVE
LA JOLLA,CA92093 		95-6006144 501(C)(3) 194,830 0     MEDICAL RESEARCH
(21) THE UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER
5323 HARRY HINES BLVD
DALLAS,TX75390 		74-6000089 501(C)(3) 74,768 0     MEDICAL RESEARCH
(22) THE WINIFRED MASTERSON BURKE MEDICAL RESEARCH INSTITUTE
785 MAMARONECK AVENUE
WHITE PLAINS,NY10605 		13-3434924 501(C)(3) 61,572 0     MEDICAL RESEARCH
(23) THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES
10920 WILSHIRE BLVD 5TH FLOOR
LOS ANGELES,CA90024 		95-6006143 501(C)(3) 45,145 0     MEDICAL RESEARCH
(24) UNIVERSITY OF COLORADO
1800 GRANT STREET
DENVER,CO80203 		84-6000555 501(C)(3) 5,483 0     MEDICAL RESEARCH
(25) UNIVERSITY OF FLORIDA
DEPT OF NEUROLOGY L3-100 MCKNIGHT
BRAIN INSTITUTE NEWELL DRIVE
GAINESVILLE,FL32611 		59-6002052 501(C)(3) 359,182 0     MEDICAL RESEARCH
(26) UNIVERSITY OF MASSACHUSETTS
100 MORRISSEY BLVD
BOSTON,MA02125 		04-3167352 501(C)(3) 300,000 0     MEDICAL RESEARCH
(27) UNIVERSITY OF ROCHESTER
515 HYLAN BUILDING RC BOX 270140
ROCHESTER,NY14627 		16-0743209 501(C)(3) 100,000 0     MEDICAL RESEARCH
(28) UPLIFTING ATHLETES
PO BOX 574 8 ATKINSON DRIVE
DOYLESTOWN,PA18901 		34-1986485 501(C)(3) 10,000 0     MEDICAL RESEARCH
(29) USF FOUNDATION
4202 E FOWLER AVE ALC100
TAMPA,FL33620 		59-0879015 501(C)(3) 100,000 0     MEDICAL RESEARCH
(30) VESIGEN INC
790 MEMORIAL DRIVE SUITE 103
CAMBRIDGE,MA02139 		84-2449757   204,136 0     MEDICAL RESEARCH
(31) WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY
1300 YORK AVENUE C-118
NEW YORK,NY10065 		13-1623978 501(C)(3) 274,855 0     MEDICAL RESEARCH
(32) CHILDREN'S HOSPITAL OF PHILADELPHIA FOUNDATION
34TH ST CIVIC CENTER BLVD
PHILADELPHIA,PA19104 		23-2237932 501(C)(3) 500,000 0     MEDICAL RESEARCH
2
Enter total number of section 501(c)(3) and government organizations listed in the line 1 table ................. Bullet Image
27
3
Enter total number of other organizations listed in the line 1 table ........................ . Bullet Image
5
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50055P
Schedule I (Form 990) Rev. 1-2025

Schedule I (Form 990) Rev. 1-2025
Page 2
Part III
Grants and Other Assistance to Domestic Individuals. Complete if the organization answered "Yes" on Form 990, Part IV, line 22.
Part III can be duplicated if additional space is needed.
(a) Type of grant or assistance (b) Number of
recipients		 (c) Amount of
cash grant		 (d) Amount of
noncash assistance		 (e) Method of valuation (book,
FMV, appraisal, other)		 (f) Description of noncash assistance
(1) FARA FELLOWS AWARD 1 13,350      
(1)
(2)
(3)
(4)
(5)
(6)
(7)
Part IV
Supplemental Information. Provide the information required in Part I, line 2; Part III, column (b); and any other additional information.
Return Reference Explanation
PART I, LINE 2: GRANTS ARE REVIEWED BY INDEPENDENT SCIENTIFIC ADVISORS AND APPROVED BY BOARD. ONCE GRANTS ARE AWARDED THE ORGANIZATION REQUIRES REGULAR RESEARCH AND FINANCIAL REPORTS FROM THE INSTITUTIONS. FARA INSTITUTED A PROGRAM TO SUPPORT YOUNG EMERGING SCIENTISTS (UP TO SIX PER YEAR) WITH THE FARA FELLOWS AWARD. APPLICATIONS ARE SUBMITTED BY THE FELLOWS AND THEIR MENTORS AND ARE REVIEWED BY INDEPENDENT SCIENTIFIC ADVISORS AND APPROVED BY THE BOARD.
Schedule I (Form 990) Rev. 1-2025



Additional Data


Software ID:  
Software Version:  


Schedule J
(Form 990)
(Rev. January 2025)
Department of the Treasury
Internal Revenue Service
Compensation Information
For certain Officers, Directors, Trustees, Key Employees, and Highest
Compensated Employees
medium right arrow graphic Complete if the organization answered "Yes" on Form 990, Part IV, line 23.
medium right arrow graphic Attach to Form 990.
medium right arrow graphic Go to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
Open to Public Inspection
Name of the organization
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE
 
Employer identification number

52-2122720
Part I
Questions Regarding Compensation
Yes
No
1a
Check the appropiate box(es) if the organization provided any of the following to or for a person listed on Form
990, Part VII, Section A, line 1a. Complete Part III to provide any relevant information regarding these items.
b
If any of the boxes on Line 1a are checked, did the organization follow a written policy regarding payment or reimbursement or provision of all of the expenses described above? If "No," complete Part III to explain .....
1b
 
 
2
Did the organization require substantiation prior to reimbursing or allowing expenses incurred by all
directors, trustees, officers, including the CEO/Executive Director, regarding the items checked on Line 1a? ....
2
 
 
3
Indicate which, if any, of the following the filing organization used to establish the compensation of the
organization's CEO/Executive Director. Check all that apply. Do not check any boxes for methods
used by a related organization to establish compensation of the CEO/Executive Director, but explain in Part III.
4
During the year, did any person listed on Form 990, Part VII, Section A, line 1a, with respect to the filing organization or a related organization:
a
Receive a severance payment or change-of-control payment? .............
4a
 
No
b
Participate in, or receive payment from, a supplemental nonqualified retirement plan? .........
4b
 
No
c
Participate in, or receive payment from, an equity-based compensation arrangement? .........
4c
 
No
If "Yes" to any of lines 4a-c, list the persons and provide the applicable amounts for each item in Part III.
Only 501(c)(3), 501(c)(4), and 501(c)(29) organizations must complete lines 5-9.
5
For persons listed on Form 990, Part VII, Section A, line 1a, did the organization pay or accrue any
compensation contingent on the revenues of:
a
The organization? ....................
5a
 
No
b
Any related organization? .......................
5b
 
No
If "Yes," on line 5a or 5b, describe in Part III.
6
For persons listed on Form 990, Part VII, Section A, line 1a, did the organization pay or accrue any
compensation contingent on the net earnings of:
a
The organization? ..................
6a
 
No
b
Any related organization? ......................
6b
 
No
If "Yes," on line 6a or 6b, describe in Part III.
7
For persons listed on Form 990, Part VII, Section A, line 1a, did the organization provide any nonfixed
payments not described in lines 5 and 6? If "Yes," describe in Part III ............
7
 
No
8
Were any amounts reported on Form 990, Part VII, paid or accured pursuant to a contract that was
subject to the initial contract exception described in Regulations section 53.4958-4(a)(3)? If "Yes," describe
in Part III ..........................
8
 
No
9
If "Yes" on line 8, did the organization also follow the rebuttable presumption procedure described in Regulations section 53.4958-6(c)? .........................
9
 
 
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50053T
Schedule J (Form 990) (Rev. 1-2025)

Schedule J (Form 990) (Rev. 1-2025)
Page 2
Part II
Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees. Use duplicate copies if additional space is needed.
For each individual whose compensation must be reported on Schedule J, report compensation from the organization on row (i) and from related organizations, described in the
instructions, on row (ii). Do not list any individuals that are not listed on Form 990, Part VII.
Note. The sum of columns (B)(i)-(iii) for each listed individual must equal the total amount of Form 990, Part VII, Section A, line 1a, applicable column (D) and (E) amounts for that individual.
(A) Name and Title (B) Breakdown of W-2, 1099-MISC compensation, and/or 1099-NEC (C) Retirement and other deferred compensation (D) Nontaxable
benefits		 (E) Total of columns
(B)(i)-(D) 		(F) Compensation in column (B) reported as deferred on prior Form 990
(i) Base
compensation 		(ii) Bonus & incentive
compensation 		(iii) Other reportable compensation
1BARBARA A TATE
CHIEF SCIENTIFIC OFFICER 		(i)

(ii)		 250,000
-------------
0 		0
-------------
0 		0
-------------
0 		4,833
-------------
0 		694
-------------
0 		255,527
-------------
0 		0
-------------
0
2JENNIFER M FARMER
CHIEF EXECUTIVE OFFICER 		(i)

(ii)		 165,000
-------------
0 		0
-------------
0 		0
-------------
0 		4,950
-------------
0 		728
-------------
0 		170,678
-------------
0 		0
-------------
0
Schedule J (Form 990) (Rev. 1-2025)

Schedule J (Form 990) (Rev. 1-2025)
Page 3
Part III
Supplemental Information
Provide the information, explanation, or descriptions required for Part I, lines 1a, 1b, 3, 4a, 4b, 4c, 5a, 5b, 6a, 6b, 7, and 8, and for Part II. Also complete this part for any additional information.
Return Reference Explanation
Schedule J (Form 990) (Rev. 1-2025)

Additional Data


Software ID:  
Software Version:  
SCHEDULE M
(Form 990)

Department of the Treasury
Internal Revenue Service
Noncash Contributions
Right pointing arrow large image Complete if the organizations answered "Yes" on Form 990, Part IV, lines 29 or 30.
Right pointing arrow large image Attach to Form 990.
Right pointing arrow large image Go to www.irs.gov/Form990 for the latest information.
OMB No. 1545-0047
2024
Open to Public Inspection
Name of the organization
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE
 
Employer identification number

52-2122720
Part I
Types of Property
(a)
Check if applicable 		(b)
Number of contributions or items contributed 		(c)
Noncash contribution amounts reported on
Form 990, Part VIII, line 1g 		(d)
Method of determining
noncash contribution amounts
1 Art—Works of art ....        
2 Art—Historical treasures .        
3 Art—Fractional interests ..        
4 Books and publications ..      
5 Clothing and household
goods ....... 		     
6 Cars and other vehicles ..        
7 Boats and planes ....        
8 Intellectual property ...        
9 Securities—Publicly traded . X 12 460,344 HI-LOW DATE OF GIFT
10 Securities—Closely held stock .        
11 Securities—Partnership, LLC,
or trust interests .... 		       
12 Securities—Miscellaneous ..        
13 Qualified conservation
contribution—Historic
structures ..... 		       
14 Qualified conservation
contribution—Other ... 		       
15 Real estate—Residential .        
16 Real estate—Commercial ..        
17 Real estate—Other ...        
18 Collectibles .....        
19 Food inventory ...        
20 Drugs and medical supplies .        
21 Taxidermy ......        
22 Historical artifacts ....        
23 Scientific specimens ..        
24 Archeological artifacts ...        
25 Other Right pointing arrow large image ( AUCTION ITEMS ) X 495 421,167 FAIR MARKET VALUE
26 Other Right pointing arrow large image ( )
27 Other Right pointing arrow large image ( )
28 Other Right pointing arrow large image ( )
29
Number of Forms 8283 received by the organization during the tax year for contributions
for which the organization completed Form 8283, Part IV, Donee Acknowledgement
29
 
Yes
No
30a
During the year, did the organization receive by contribution any property reported in Part I, lines 1 through 28, that it must hold for at least three years from the date of the initial contribution, and which isn't required to be used for exempt purposes for the entire holding period? ...................
30a
 
No
b
If "Yes," describe the arrangement in Part II.
31
Does the organization have a gift acceptance policy that requires the review of any nonstandard contributions?
31
Yes
 
32a
Does the organization hire or use third parties or related organizations to solicit, process, or sell noncash
contributions? ..........................
32a
 
No
b
If "Yes," describe in Part II.
33
If the organization didn't report an amount in column (c) for a type of property for which column (a) is checked,
describe in Part II.
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 51227J
Schedule M (Form 990) (2024)
Schedule M (Form 990) (2024)
Page 2
Part IISupplemental Information. Provide the information required by Part I, lines 30b, 32b, and 33, and whether the organization is reporting in Part I, column (b), the number of contributions, the number of items received, or a combination of both. Also complete this part for any additional information.
Return Reference Explanation
PART I, COLUMN (B): FOR LINE 9, THE ORGANIZATION RECOGNIZES IN COLUMN B EACH UNIQUE STOCK CONTRIBUTION RECEIVED FROM A DONOR. FOR LINE 25, THE COUNT OF AUCTION ITEMS REPRESENTS EACH INDIVIDUAL CONTRIBUTION BY A DONOR.
Schedule M (Form 990) (2024)

Additional Data


Software ID:  
Software Version:  
SCHEDULE O
(Form 990)
(Rev. January 2025)
Department of the Treasury
Internal Revenue Service
Supplemental Information to Form 990 or 990-EZ

Complete to provide information for responses to specific questions on
Form 990 or 990-EZ or to provide any additional information.
Attach to Form 990 or 990-EZ.
 Go to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
Open to Public
Inspection
Name of the organization
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE
 
Employer identification number

52-2122720
Return Reference Explanation
FORM 990, PART III, LINE 4A RESEARCH AND GRANT PROGRAM FARA DEPLOYS FINANCIAL RESOURCES TO ACCELERATE RESEARCH FOR FRIEDREICH'S ATAXIA (FA). IN 2024, FARA AWARDED $10+ MILLION IN RESEARCH FUNDING. THIS INCLUDED 46 GRANT PROJECTS THROUGH FARA'S INVESTIGATOR-INITIATED GRANT PROGRAM, INSTITUTIONAL BASED RESEARCH, AND FARA DIRECTED PROJECTS. IT ALSO INCLUDED FUNDING A PATIENT REGISTRY AND LONGITUDINAL NATURAL HISTORY THROUGH THE FA GLOBAL CLINICAL CONSORTIUM AND SUPPORT FOR COMMUNITY AWARENESS WHICH ARE DESCRIBED IN THE SECOND AND THIRD PROGRAM SECTIONS BELOW. FARA GRANT PROGRAM: FARA'S INVESTIGATOR-INITIATED GRANT PROGRAM AWARDED TWENTY-SIX NEW GRANTS AND APPROVED CONTINUED FUNDING FOR TWENTY GRANTS. RESEARCHERS ON FIVE CONTINENTS ARE RECEIVING RESEARCH FUNDING FROM FARA. THE PROGRAM IS A COMPETITIVE FUNDING MECHANISM THAT SUPPORTS RESEARCH TO FURTHER THE UNDERSTANDING OF FA AND PROMOTE THERAPEUTIC DISCOVERY AND DEVELOPMENT. FARA PRIORITIZES FUNDING PROJECTS THAT FILL GAPS IN KNOWLEDGE OF DISEASE MECHANISMS, SUPPORT EARLY DEVELOPMENT OF THERAPEUTIC INTERVENTIONS, ESTABLISH AND ADVANCE THE DEVELOPMENT OF TOOLS FOR DRUG DEVELOPERS AND ACADEMIC RESEARCHERS, AND FOCUS ON CLINICAL RESEARCH AND TRIALS. SEVERAL OF THESE GRANTS WERE CO-FUNDED WITH FARA'S FA ADVOCACY GROUP PARTNERS; THIS COLLABORATIVE APPROACH BOTH INCREASES THE NUMBER OF AVAILABLE RESEARCH DOLLARS AND HELPS TO MINIMIZE DUPLICATION OF EFFORT. WITH FARA'S GOAL IN MIND OF INSPIRING AND SUPPORTING JUNIOR INVESTIGATORS AND BUILDING THE NEXT GENERATIONS OF FA SCIENTISTS, IN 2024, FARA AWARDED GRANTS TO 11 JUNIOR INVESTIGATORS. FARA HAS ALSO IDENTIFIED OPPORTUNITIES TO FUND RESEARCH AT INSTITUTIONS WHERE THERE ARE MULTIPLE INVESTIGATORS WITH AN EXPERTISE AND COMMITMENT TO FA RESEARCH AND/OR OPPORTUNITY TO LEVERAGE TECHNOLOGIES, INNOVATION OR NEW GROWTH TO THE FA COMMUNITY. BY ESTABLISHING THESE INSTITUTIONAL FUNDING PROGRAMS, FARA CAN PROMOTE COLLABORATION AND SYNERGY ACROSS BASIC, TRANSLATIONAL AND CLINICAL RESEARCH, PROVIDE A LONGER-TERM COMMITMENT FOR RESEARCH, ATTRACT NEW INVESTIGATORS, AND LEVERAGE THE INSTITUTIONS RESOURCES AND ENGAGEMENT. FARA PROVIDES INSTITUTIONAL BASED RESEARCH SUPPORT FOR THE FA CENTER OF EXCELLENCE AT CHILDREN'S HOSPITAL OF PHILADELPHIA/ PENN MEDICINE (UNIVERSITY OF PENNSYLVANIA) AND THE FA ACCELERATOR PROGRAM AT THE BROAD INSTITUTE. FRIEDREICH'S ATAXIA CENTER OF EXCELLENCE, PHILADELPHIA, PA: THE FA CENTER OF EXCELLENCE (COE) IS A TRANSLATIONAL RESEARCH AND CLINICAL CARE CENTER DEVOTED TO FRIEDREICH ATAXIA: EXPEDITING BASIC SCIENCE AND DRUG DISCOVERY FINDINGS TO NEW TREATMENTS AND DEDICATING RESOURCES TO CLINICAL RESEARCH AND CARE TO FURTHER UNDERSTAND THE DISEASE, INFORM DRUG DEVELOPMENT AND IMPROVE OUTCOMES FOR INDIVIDUALS LIVING WITH FA. THE CENTER WAS ESTABLISHED IN MARCH 2014, WITH A COMMITMENT TO CHILDREN'S HOSPITAL OF PHILADELPHIA/ PENN MEDICINE (UNIVERSITY OF PENNSYLVANIA), PRESENTED BY FARA IN PARTNERSHIP WITH THE HAMILTON AND FINNERAN FAMILIES/ CUREFA FOUNDATION. PROJECTS AND INVESTIGATORS WITH CONTINUED FUNDING INCLUDED DR. ROB WILSON- DRUG DISCOVERY, DR. DAVID LYNCH- TRANSLATIONAL AND CLINICAL NEUROSCIENCE RESEARCH, DR. IAN BLAIR- BIOMARKER DISCOVERY, DR. CLEMENTINA MESAROS- BIOMARKER DISCOVERY, DR. KIM LIN- CARDIAC RESEARCH, AND DR. SHANA MCCORMACK- METABOLISM AND ENDOCRINOLOGY. THE COE ESTABLISHED RESEARCH INFRASTRUCTURE CONSISTING OF FOUR CORE AREAS- NEUROLOGY, CARDIAC, BIOMARKER, AND DRUG DISCOVERY. THE CENTER NOT ONLY SUPPORTS WORK WITHIN THESE DISCIPLINES BUT ALSO FOSTERS EFFICIENT COLLABORATION AND SYNERGY ACROSS THEM. FOR EXAMPLE, 95% OF INDIVIDUALS WITH FA HAVE THE SAME GENE MUTATION, A GAA REPEAT EXPANSION, HOWEVER, 5% OF INDIVIDUALS HAVE NON-GAA REPEAT MUTATIONS. COE CLINICIANS OBSERVED THAT INDIVIDUALS WITH CERTAIN NON-GAA MUTATIONS HAVE DIFFERENT CLINICAL SYMPTOMS AND DISEASE PROGRESSION (BOTH MORE AND LESS SEVERE). THESE CLINICAL OBSERVATIONS SPARKED LAB-BASED STUDIES INTO HOW SPECIFIC MISSENSE MUTATIONS MAY AFFECT FRATAXIN'S FUNCTION BEYOND ITS WELL-KNOWN ROLE IN IRON-SULFUR CLUSTER SYNTHESIS. THIS WORK EXPLORES WHETHER FRATAXIN MAY HAVE ADDITIONAL CELLULAR ACTIVITIES, OFFERING BOTH A NEW LENS THROUGH WHICH TO UNDERSTAND DISEASE VARIABILITY AND THE EXPLORATION OF NEW THERAPEUTIC TARGETS. FRIEDREICH'S ATAXIA ACCELERATOR AT THE BROAD INSTITUTE OF MIT AND HARVARD: THE FRIEDREICH'S ATAXIA ACCELERATOR (FAA) AT THE BROAD INSTITUTE OF MIT AND HARVARD WAS ESTABLISHED IN AUGUST 2020. THE FAA IS A COLLABORATIVE, MULTI-DISCIPLINARY EFFORT AIMED AT GALVANIZING RESEARCH INTO FA AND SEEDING A GROWING COMMUNITY ACROSS BROAD, MIT, HARVARD AND AFFILIATED INSTITUTIONS COMMITTED TO TACKLING FA. LED BY DR. VAMSI MOOTHA, THE FAA'S OVERARCHING GOAL IS TO NUCLEATE A RESEARCH COMMUNITY THAT LEVERAGES THE LATEST ADVANCES IN BIOMEDICAL RESEARCH TO DEVELOP NEW THERAPEUTIC STRATEGIES. DR. DAVID LIU HAS BEEN INVESTIGATING THERAPEUTIC APPROACHES THAT WOULD EDIT THE FRATAXIN GENE, WITH THE GOAL OF REMOVING THE GAA REPEATS (PRIME EDITING) OR INTERRUPTING THE GAA REPEATS (BASE EDITING) AND THUS REACTIVATING THE PROTEIN EXPRESSION. DR. GARY RUVKUN (A 2024 NOBEL LAUREATE) IS WORKING TO DISCOVER PROTEINS THAT INTERACT WITH FRATAXIN. DRS. JONATHAN AND CHRISTINE SEIDMAN ARE DISCOVERING CHANGES IN THE HEARTS OF PEOPLE WITH FA, INCLUDING AN INCREASE IN INFLAMMATION. THIS WORK IS FUNDED BY FARA, IN COLLABORATION WITH THE CUREFA FOUNDATION AND ENDFA. IT DEEPENS OUR KNOWLEDGE OF FA, AND THESE LEARNINGS WERE SHARED BY FOUR MEMBERS OF THE FAA WHO PRESENTED THEIR WORK AT THE INTERNATIONAL CONGRESS FOR ATAXIA RESEARCH (ICAR) IN NOVEMBER IN LONDON. FARA DIRECTED RESEARCH: IN 2024, FARA FUNDED DIRECTED RESEARCH PROGRAMS INCLUDING: 1. MAINTAINING A REPOSITORY OF FA CELL LINES FOR RESEARCH HTTPS://LABS.UTSOUTHWESTERN.EDU/NAPIERALA-LAB 2. TRACK-FA, A GLOBAL NEUROIMAGING CONSORTIUM ESTABLISHED IN 2020, A NATURAL HISTORY STUDY DESIGNED TO TRACK THE CHANGES IN THE BRAIN AND THE SPINAL CORD IN FA. STUDY PROGRESS IN 2024 AT THE PARTICIPATING CLINICAL SITES IN USA, BRAZIL, CANADA, GERMANY, AND AUSTRALIA OF THE 279 PARTICIPANTS ENROLLED IN THE STUDY, 100% HAD COMPLETED THEIR BASELINE AND 12-MONTH VISITS, AND MORE THAN HALF HAD COMPLETED THEIR FINAL VISITS. THIS REMARKABLE PROGRESS KEEPS THE STUDY ON TRACK TO FINALIZE DATA COLLECTION OF NEUROIMAGING OF THE BRAIN AND SPINAL, ALONG WITH CLINICAL OUTCOMES AND BLOOD BIOMARKERS, IN 2025. 3. FOSTERING A COLLABORATIVE EFFORT BETWEEN RESEARCHERS AT UNIVERSITY OF OKLAHOMA, UNIVERSITY OF TEXAS SOUTHWESTERN, AND UNIVERSITY OF PENNSYLVANIA TO STUDY THE PRECISE MECHANISM OF THIS GENE SILENCING IN DIFFERENT TISSUES AND MODELS OVER TIME. 4. DEVELOPMENT AND VALIDATION OF A POTENCY ASSAY FOR USE IN THE DEVELOPMENT OF GENE AND PROTEIN REPLACEMENT THERAPIES. 5. LEADING WORK TO CREATE A NEW DISEASE MODEL FOR PRE-CLINICAL RESEARCH, AN FA RAT MODEL. 6. IDENTIFYING AND FUNDING RESEARCH TO UNDERSTAND THE THERAPEUTIC WINDOW (MINIMAL AMOUNT OF FRATAXIN NEEDED FOR A THERAPEUTIC BENEFIT AND THRESHOLD FOR MAXIMUM AMOUNTS OR TOXIC AMOUNTS OF FRATAXIN IN THE CELL. 7. ONGOING MAINTENANCE OF CLINICAL MANAGEMENT GUIDELINES IN FA FOR REFERENCE USE BY PHYSICIANS AND PATIENTS (PUBLISHED IN 2022): FRDAGUIDELINES.ORG 8. RETROSPECTIVE CARDIAC NATURAL HISTORY STUDY-THIS PROJECT RE-ANALYZES EXISTING ECHOCARDIOGRAMS TO QUICKLY ASSESS THE VALUE OF THESE DATA IN UNDERSTANDING AND PREDICTING THE PROGRESSION OF HEART DISEASE IN FA. OF NOTE, FA SHARES SIMILAR SYMPTOMS AND DISEASE MECHANISMS WITH OTHER DISEASES, BOTH RARE AND COMMON. RESEARCH INTO FA CAN PROVIDE INSIGHTS AND ADVANCES IN OTHER DISEASES SUCH AS MITOCHONDRIAL DISEASES, MUSCULAR DYSTROPHIES, DIABETES, AND CARDIOMYOPATHY.
FORM 990, PART VI, SECTION B, LINE 11B COPIES OF 990 ARE DISTRIBUTED TO BOARD MEMBERS FOR REVIEW AND APPROVAL PRIOR TO FILING.
FORM 990, PART VI, SECTION B, LINE 12C ALL NEW AND EXISTING BOARD MEMBERS ARE REQUIRED TO ANNUALLY REVIEW AND SIGN A CONFLICT OF INTEREST POLICY AND REPORT DISCLOSURES.
FORM 990, PART VI, SECTION B, LINE 15 EVALUATION AND COMPENSATION COMMITTEE PERFORMS EMPLOYEE EVALUATIONS AND DETERMINES SALARY INCREASES ON A YEARLY BASIS FOR ALL EMPLOYEES. COMMITTEE EXAMINES BENCHMARK DATA IN DETERMINING SALARIES FOR PRESIDENT, CEO, CSO AND DIRECTOR FINANCE ADMINISTRATION.
FORM 990, PART VI, SECTION C, LINE 19 FORM 990 IS AVAILABLE ON THE ORGANIZATION'S WEBSITE AS WELL AS GUIDESTAR.ORG AND CHARITYNAVIGATOR.ORG FINANCIAL STATEMENTS ARE AVAILABLE ON THE ORGANIZATION'S WEBSITE. THE GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FORM 1023 ARE AVAILABLE UPON REQUEST.
FORM 990, PART XI, LINE 9: PRIOR YEAR GRANT REFUNDS INCLUDED IN SUPPORT ON FINANCIAL STATEMENTS 91,718.
FORM 990, PART XII, LINE 2C FARA'S AUDIT COMMITTEE CONSISTS OF THE FINANCE COMMITTEE, CEO AND ONE AT-LARGE BOARD MEMBER. EACH YEAR THE AUDIT COMMITTEE SEEKS THE SERVICES OF AN OUTSIDE ACCOUNTING FIRM AND CONTRACTS FOR A FULL AUDIT, PREPARATION OF FINANCIAL STATEMENTS AND FILING OF THE 990. THE AUDIT COMMITTEE IS RESPONSIBLE FOR REVIEWING RECOMMENDATIONS FROM THE AUDIT AND PROPOSING NEW POLICIES AND PROCEDURES AS NECESSARY. THE AUDIT COMMITTEE ALSO PARTICIPATES IN DETAILED REVIEW OF FINANCIAL STATEMENTS AND 990 PRIOR TO SHARING WITH THE FULL BOARD FOR A VOTE. ALL 990 INFORMATION IS VERIFIED FOR ACCURACY AND COMPLETENESS BY FARA'S DIRECTOR OF FINANCE, FARA'S VP OF FUNDRAISING AND COMMUNICATIONS AND FARA'S CEO. THE VERIFIED DRAFT IS REVIEWED BY THE FARA FINANCE COMMITTEE AND SUBMITTED TO THE FULL FARA BOARD FOR REVIEW AND APPROVAL PRIOR TO FILING.
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.
Cat. No. 51056K
Schedule O (Form 990) (Rev. 1-2025)


Additional Data


Software ID:  
Software Version:  
SCHEDULE R
(Form 990)
(Rev. January 2025)
Department of the Treasury
Internal Revenue Service
Related Organizations and Unrelated Partnerships
Complete if the organization answered "Yes" on Form 990, Part IV, line 33, 34, 35b, 36, or 37.
Attach to Form 990.
Go to www.irs.gov/Form990 for instructions and the latest information.

OMB No. 1545-0047
Open to Public Inspection
Name of the organization
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE
 
Employer identification number

52-2122720
Part I
Identification of Disregarded Entities. Complete if the organization answered "Yes" on Form 990, Part IV, line 33.
(a)
Name, address, and EIN (if applicable) of disregarded entity


(b)
Primary activity


 		(c)
Legal domicile (state
or foreign country)

 		(d)
Total income


 		(e)
End-of-year assets


 		(f)
Direct controlling
entity










Part II
Identification of Related Tax-Exempt Organizations. Complete if the organization answered "Yes" on Form 990, Part IV, line 34 because it had one or more related tax-exempt organizations during the tax year.
(a)
Name, address, and EIN of related organization


(b)
Primary activity


 		(c)
Legal domicile (state
or foreign country)

 		(d)
Exempt Code section


 		(e)
Public charity status
(if section 501(c)(3))

 		(f)
Direct controlling
entity

 		(g)
Section 512(b)(13) controlled entity?
Yes No
(1)STICHTING FRIEDREICH'S ATAXIA RESEARCH ALLIANCE EUROPE
JACHTHAVENWEG 111
KM AMSTERDAM    
NL
RESEARCH NL     FRIEDREICH'S ATAXIA RESEARCH ALLIANCE
 
 
No












For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50135Y
Schedule R (Form 990) (Rev. 1-2025)
Schedule R (Form 990) (Rev. 1-2025)
Page 2
Part III
Identification of Related Organizations Taxable as a Partnership. Complete if the organization answered "Yes" on Form 990, Part IV, line 34, because it had one or more related organizations treated as a partnership during the tax year.
(a)
Name, address, and EIN of
related organization



 		(b)
Primary activity




 		(c)
Legal
domicile
(state or foreign
country)


 		(d)
Direct controlling
entity



 		(e)
Predominant income(related, unrelated, excluded from tax under sections 512-514)

(f)
Share of total income




 		(g)
Share of end-of-year
assets



 		(h)
Disproprtionate allocations?




 		(i)
Code V-UBI
amount in box 20 of
Schedule K-1
(Form 1065)
 		(j)
General or
managing
partner?



 		(k)
Percentage
ownership
Yes No Yes No












Part IV
Identification of Related Organizations Taxable as a Corporation or Trust. Complete if the organization answered "Yes" on Form 990, Part IV, line 34 because it had one or more related organizations treated as a corporation or trust during the tax year.
(a)
Name, address, and EIN of
related organization
 		(b)
Primary activity
 		(c)
Legal
domicile
(state or foreign
country)
 		(d)
Direct controlling
entity
 		(e)
Type of entity
(C corp, S corp,
or trust) 		(f)
Share of total income
 		(g)
Share of end-of-year
assets
 		(h)
Percentage
ownership
 		(i)
Section 512(b)(13) controlled entity?
Yes No












Schedule R (Form 990) (Rev. 1-2025)
Schedule R (Form 990) (Rev. 1-2025)
Page 3
Part V
Transactions With Related Organizations. Complete if the organization answered "Yes" on Form 990, Part IV, line 34, 35b, or 36.
Note. Complete line 1 if any entity is listed in Parts II, III, or IV of this schedule.
Yes
No
1 During the tax year, did the orgranization engage in any of the following transactions with one or more related organizations listed in Parts II-IV?
a Receipt of (i) interest, (ii) annuities, (iii) royalties, or (iv) rent from a controlled entity .....................
1a
 
No
b Gift, grant, or capital contribution to related organization(s) ............................
1b
Yes
 
c Gift, grant, or capital contribution from related organization(s) ............................
1c
 
No
d Loans or loan guarantees to or for related organization(s) ............................
1d
 
No
e Loans or loan guarantees by related organization(s) ............................
1e
 
No
f Dividends from related organization(s) ............................
1f
 
No
g Sale of assets to related organization(s) ............................
1g
 
No
h Purchase of assets from related organization(s) ............................
1h
 
No
i Exchange of assets with related organization(s) ............................
1i
 
No
j Lease of facilities, equipment, or other assets to related organization(s) .......................
1j
 
No
k Lease of facilities, equipment, or other assets from related organization(s) ......................
1k
 
No
l Performance of services or membership or fundraising solicitations for related organization(s) .....................
1l
 
No
m Performance of services or membership or fundraising solicitations by related organization(s) .................
1m
 
No
n Sharing of facilities, equipment, mailing lists, or other assets with related organization(s) ...................
1n
 
No
o Sharing of paid employees with related organization(s) ............................
1o
 
No
p Reimbursement paid to related organization(s) for expenses ............................
1p
 
No
q Reimbursement paid by related organization(s) for expenses ............................
1q
 
No
r Other transfer of cash or property to related organization(s) ............................
1r
 
No
s Other transfer of cash or property from related organization(s) ............................
1s
 
No
2
If the answer to any of the above is "Yes," see the instructions for information on who must complete this line, including covered relationships and transaction thresholds.
(a)
Name of related organization 		(b)
Transaction
type (a-s) 		(c)
Amount involved 		(d)
Method of determining amount involved





Schedule R (Form 990) (Rev. 1-2025)
Schedule R (Form 990) (Rev. 1-2025)
Page 4
Part VI
Unrelated Organizations Taxable as a Partnership. Complete if the organization answered "Yes" on Form 990, Part IV, line 37.
Provide the following information for each entity taxed as a partnership through which the organization conducted more than five percent of its activities (measured by total assets or gross revenue) that was not a related organization. See instructions regarding exclusion for certain investment partnerships.
(a)
Name, address, and EIN of entity 		(b)
Primary activity 		(c)
Legal domicile
(state or foreign
country) 		(d)
Predominant income (related, unrelated, excluded from tax under sections 512-514)

(e)
Are all partners
section
501(c)(3)
organizations? 		(f)
Share of total income




 		(g)
Share of
end-of-year
assets 		(h)
Disproprtionate allocations? 		(i)
Code V-UBI
amount in box 20
of Schedule K-1
(Form 1065) 		(j)
General or
managing
partner? 		(k)
Percentage
ownership
Yes No Yes No Yes No






























Schedule R (Form 990) (Rev. 1-2025)
Schedule R (Form 990) (Rev. 1-2025)
Page 5
Part VII
Supplemental Information
Provide additional information for responses to questions on Schedule R. See instructions.
Return Reference Explanation
Schedule R (Form 990) (Rev. 1-2025)

Additional Data


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