Form990
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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)
MediumBullet Do not enter social security numbers on this form as it may be made public.
MediumBullet Information about Form 990 and its instructions is at www.IRS.gov/form990.
OMB No. 1545-0047
2015
Open to Public Inspection
A For the 2015 calendar year, or tax year beginning 01-01-2015 , and ending 12-31-2015
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 $ 7,218,130
F Name and address of principal officer:
JENNIFER FARMER
533 W UWCHLAN AVENUE
DOWNINGTOWN,PA19335
I
Tax-exempt status: (   ) LeftBullet (insert no.) or
J
Website:MediumBullet
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 MediumBullet  
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 BY ADVANCING RESEARCH, AWARENESS AND PARTNERSHIPS.
2 Check this box MediumBullet
3 Number of voting members of the governing body (Part VI, line 1a) ........ 3 18
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 2015 (Part V, line 2a) ...... 5 8
6 Total number of volunteers (estimate if necessary) ............. 6 365
7a Total unrelated business revenue from Part VIII, column (C), line 12 ........ 7a 0
b Net unrelated business taxable income from Form 990-T, line 34 ......... 7b 0
Revenues Prior Year Current Year
8 Contributions and grants (Part VIII, line 1h) ......... 4,958,831 5,701,123
9 Program service revenue (Part VIII, line 2g) ......... 0 0
10 Investment income (Part VIII, column (A), lines 3, 4, and 7d ) .... 287,653 19,427
11 Other revenue (Part VIII, column (A), lines 5, 6d, 8c, 9c, 10c, and 11e) -3,737 -2,405
12 Total revenue—add lines 8 through 11 (must equal Part VIII, column (A), line 12) 5,242,747 5,718,145
Expenses; 13 Grants and similar amounts paid (Part IX, column (A), lines 1–3 )... 4,113,902 4,750,666
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) 462,636 503,463
16a Professional fundraising fees (Part IX, column (A), line 11e) ..... 0 0
b Total fundraising expenses (Part IX, column (D), line 25) MediumBullet98,208    
17 Other expenses (Part IX, column (A), lines 11a–11d, 11f–24e).... 233,456 367,667
18 Total expenses. Add lines 13–17 (must equal Part IX, column (A), line 25) 4,809,994 5,621,796
19 Revenue less expenses. Subtract line 18 from line 12....... 432,753 96,349
Net Assets or Fund Balances; Beginning of Current Year End of Year
20 Total assets (Part X, line 16)............. 4,011,934 4,057,130
21 Total liabilities (Part X, line 26)............. 290,640 289,961
22 Net assets or fund balances. Subtract line 21 from line 20..... 3,721,294 3,767,169
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.
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Type or print name and title
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Preparer's signature
Date
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Firm's name MediumBullet
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Firm's address MediumBullet



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Cat. No. 11282Y Form 990 (2015)
Form 990 (2015)
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, GOV'T 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 $ 4,361,454 including grants of $ 4,094,552 ) (Revenue $   )
RESEARCH & GRANT PROGRAM:FARA'S COMMITMENT TO FUNDING HIGH QUALITY RESEARCH PROJECTS THAT MOVE US CLOSER TO EFFECTIVE TREATMENTS CONTINUED AT AN ACCELERATED PACE IN 2015. IN TOTAL, FARA PROVIDED >$4.7M IN BASIC AND TRANSLATIONAL AND CLINICAL RESEARCH GRANTS, THE FRIEDREICH'S ATAXIA CENTER OF EXCELLENCE, SCIENTIFIC CONFERENCE SUPPORT AND CLINICAL RESEARCH INFRASTRUCTURE FUNDING. OVER THE PAST YEAR, 35 NEW LETTERS OF INTENT FOR FUNDING REQUESTS WERE SUBMITTED, 23 RESEARCHERS WERE INVITED TO APPLY FOR GRANT FUNDING, AND AFTER RIGOROUS PEER REVIEW, 14 WERE DETERMINED MERITORIOUS AND AWARDED FUNDING IN 2015. IN ADDITION, BASED ON EXCELLENT PROGRESS, CONTINUATION FUNDING WAS PROVIDED FOR 17 PROJECTS, FOR A TOTAL OF 31 RESEARCH GRANTS AWARDED. FARA ALSO AWARDED CONFERENCE GRANTS TO SUPPORT SCIENTIFIC MEETINGS WITH CONTENT FOCUSED ON FRIEDREICH'S ATAXIA. THESE FUNDED PROJECTS ADDRESS NUMEROUS IMPORTANT RESEARCH QUESTIONS THAT DIRECTLY TARGET FARA'S STRATEGIC RESEARCH INITIATIVES, INCLUDING EVALUATING OF MECHANISMS OF DISEASE, DRUG DISCOVERY, PRE-CLINICAL AND CLINICAL STUDIES OF LEAD CANDIDATES IN THE TREATMENT PIPELINE, ADVANCES IN GENE AND CELL THERAPY APPROACHES, ADVANCES IN DIFFERENTIATION OF INDUCED PLURIPOTENT STEM (IPS) CELL LINES FROM FA PATIENTS INTO SENSORY NEURONS AND CARDIOMYOCYTES, DEVELOPMENT OF NEW ANIMAL MODELS, CARDIAC RESEARCH AND EVALUATION OF NOVEL BIOMARKERS. SEVERAL ARE CO-FUNDED WITH OUR FRIEDREICH'S ATAXIA ADVOCACY GROUP PARTNERS; THIS COLLABORATIVE APPROACH BOTH INCREASES THE NUMBER OF AVAILABLE RESEARCH DOLLARS AND HELPS TO MINIMIZE DUPLICATION OF EFFORT. OF NOTE, FA SHARES SIMILAR SYMPTOMS AND DISEASE MECHANISMS WITH OTHER DISEASES, BOTH RARE AND COMMON. RESEARCH INTO FA IS PROVIDING INSIGHTS AND ADVANCES IN OTHER DISEASES SUCH AS MITOCHONDRIAL DISEASES, MUSCULAR DYSTROPHIES, DIABETES, AND CARDIOMYOPATHY. 2015 FUNDED RESEARCH INITIATIVES: FRIEDREICH'S ATAXIA CENTER OF EXCELLENCE, PHILADELPHIA PAIN MARCH 2014, FARA ANNOUNCED THE ESTABLISHMENT OF THE PENN MEDICINE/ CHILDREN'S HOSPITAL OF PHILADELPHIA FRIEDREICH'S ATAXIA CENTER OF EXCELLENCE. THE CENTER WAS LAUNCHED WITH A GIFT OF $3.25 MILLION (OVER 3 YEARS) PRESENTED BY FARA IN PARTNERSHIP WITH THE HAMILTON AND FINNERAN FAMILIES. THIS CENTER WILL HELP TO EXPEDITE BASIC SCIENCE AND DRUG DISCOVERY FINDINGS FOR NEW TREATMENTS, PROVIDE RESOURCES FOR CLINICAL RESEARCH AND CARE THAT WILL HELP TO INCREASE UNDERSTANDING OF THE DISEASE, AND IMPROVE OUTCOMES FOR INDIVIDUALS LIVING WITH FRIEDREICH'S ATAXIA. PROJECTS AND INVESTIGATORS BEING FUNDED INCLUDE DR. ROB WILSON- DRUG DISCOVERY, DR. DAVID LYNCH- CLINICAL AND NEUROSCIENCE RESEARCH, DR, IAN BLAIR- METABOLIC BIOMARKERS, AND DR. KIM LIN- CARDIAC RESEARCH.SOME BRIEF HIGHLIGHTS OF RESEARCH OCCURRING AT THE CENTER, INCLUDING RECENT PUBLICATIONS, ARE PROVIDED BELOW: CREATED A CARDIAC RESEARCH AND CLINICAL CARE CORE AND LAUNCHED 3 NEW CARDIAC STUDIES (CARDIAC MRI, SERUM BIOMARKERS AND EXERCISE TOLERANCE) WITH INTERNATIONAL COLLABORATION CREATED A BIOMARKER CORE AND IDENTIFIED 3 NEW BLOOD BASED BIOMARKERSSTABLE ISOTOPES AND LC-MS FOR MONITORING METABOLIC DISTURBANCES IN FRIEDREICH'S ATAXIA PLATELETS. WORTH AJ, BASU SS, DEUTSCH EC, HWANG WT, SNYDER NW, LYNCH DR, BLAIR IA. BIOANALYSIS. 2015;7(15):1843-55. FRATAXIN LEVELS IN PERIPHERAL TISSUE IN FRIEDREICH ATAXIA. LAZAROPOULOS M, DONG Y, CLARK E, GREELEY NR, SEYER LA, BRIGATTI KW, CHRISTIE C, PERLMAN SL, WILMOT GR, GOMEZ CM, MATHEWS KD, YOON G,ZESIEWICZ T, HOYLE C, SUBRAMONY SH, BROCHT AF, FARMER JM, WILSON RB, DEUTSCH EC, LYNCH DR ANN CLIN TRANSL NEUROL. 2015 AUG;2(8):831-42. CREATED A PATIENT-DERIVED CELL REPOSITORY IN COLLABORATION WITH DR. NAPIERALA AT UNIVERSITY OF ALABAMA BIRMINGHAM, CELL LINES ARE BEING SHARED WITH THE RESEARCH COMMUNITY, > 6 COMPANIES AND >3 ACADEMICS SOURCING CELLS FOR DRUG DISCOVERY AND RESEARCH." ESTABLISHED A DRUG DISCOVERY CORE THAT ADVANCES INTERNALLY LED DRUG DISCOVERY AS WELL AS COLLABORATIONS WITH EXTERNAL PARTNERS. 3 NOVEL THERAPEUTIC DISCOVERIESPHENOTYPIC SCREENING FOR FRIEDREICH ATAXIA USING RANDOM SHRNA SELECTION.COTTICELLI MG, ACQUAVIVA F, XIA S, KAUR A, WANG Y, WILSON RB. J BIOMOL SCREEN. 2015 OCT;20(9):1084-90.BIOMARKER INITIATIVEBIOMARKERS ARE BIOLOGICAL MEASUREMENTS THAT IN A RELATIVELY SHORT TIMEFRAME CAN GIVE US INFORMATION INDICATING WHAT RESULT MIGHT BE SEEN IN A MUCH LONGER STUDY. FARA LAUNCHED AN INITIATIVE TO LOOK FOR NOVEL BIOMARKERS FOR FA, STARTING WITH A NOVEMBER 2014 MEETING WHERE EXPERTS CAME TOGETHER TO PRIORITIZE POSSIBLE MARKERS. A YEAR LATER, FARA, WITH ITS INDUSTRY AND ACADEMIC PARTNERS, LAUNCHED THREE NEW UNIQUE STUDIES: THE CHILDREN'S HOSPITAL OF PHILADELPHIA AND HOPITAL ERASME IN BRUSSELS HAVE INITIATED A STUDY TO LOOK AT NEUROLOGICAL BIOMARKERS-MARKERS THAT WOULD SHOW THE DEGENERATION OF THE SENSORY OR MOTOR NERVES. THEY ARE LOOKING AT FIVE DIFFERENT GROUPS OF MEASUREMENTS, WHICH MEASURE THE SIGNALS FROM SPECIFIC NERVES AND THEIR ROUTE TO THE BRAIN. THESE ARE EXPLORATORY MEASURES-THAT IS, WHILE THE EXPERTS THINK THEY COULD BE USEFUL BIOMARKERS, MANY OF THE MEASURES HAVE NEVER BEEN STUDIED IN FA PATIENTS BEFORE. THESE MAY TURN OUT TO BE HIGHLY USEFUL BIOMARKERS, IN WHICH CASE MORE DETAILED STUDIES WILL BE NEEDED, OR MAY PROVE TO BE USELESS, IN WHICH CASE THEY WILL BE DROPPED. HOWEVER, WHICHEVER THE OUTCOME, WE WILL HAVE LEARNED MORE ABOUT THE NATURE OF THE DISEASE THROUGH COMPLETION OF THE STUDIES. THE UNIVERSITY OF ROCHESTER HAS LAUNCHED A STUDY LOOKING AT THE NERVES THEMSELVES, AS OPPOSED TO THE SIGNALS SENT BY THE NERVES. THIS STUDY WILL LOOK AT FOUR GROUPS OF MEASUREMENTS TYPICALLY USED IN OTHER NERVE DISEASES TO SEE IF AND HOW THEY CHANGE IN THE COURSE OF DISEASE PROGRESSION IN FA. LIKE THE FIRST STUDY, THIS IS HIGHLY EXPLORATORY. MURDOCH CHILDREN'S RESEARCH CENTER IN AUSTRALIA AND UNIVERSITY OF SOUTH FLORIDA ARE WORKING ON VALIDATING QUANTITATIVE MEASURES OF GAIT AND BALANCE OVER TIME. EACH GROUP HAS DONE SMALL PILOT STUDIES OF THESE MEASURES AND SHOWN THAT THEY CAN DETECT DIFFERENCES IN INDIVIDUALS WITH FA. THEY ALSO HAVE SOME DATA TO SUGGEST THAT OVER THE COURSE OF DISEASE, BOTH MEASURES CHANGE SIGNIFICANTLY. THIS STUDY WILL GATHER MORE DATA OVER SHORTER PERIODS OF TIME (TYPICAL TO A CLINICAL TRIAL OF SIX MONTHS AND 12 MONTHS), DETERMINING WHICH PRECISE MEASURES ARE MOST SENSITIVE AND ACCURATE.A FEW HIGHLIGHTED NEW RESEARCH GRANTS:2015 KEITH MICHAEL ANDRUS MEMORIAL AWARD (FOR CARDIAC RESEARCH), TITLE: SCREENING OF PHENOTYPIC ABNORMALITIES IN FRIEDREICH'S ATAXIA-INDUCED PLURIPOTENT STEM CELL-DERIVED CMS, PRINCIPAL INVESTIGATOR, DR. ALICE PEBAY (CENTRE FOR EYE RESEARCH AUSTRALIA)MAJOR ADVANCES IN STEM CELL TECHNOLOGY ARE RAPIDLY MOVING TOWARDS GENERATING 'EMBRYONIC-LIKE CELLS' FROM ADULT HUMAN TISSUE. THESE CELLS, KNOWN AS INDUCED PLURIPOTENT STEM CELLS (IPSCS), HAVE ESSENTIALLY THE SAME PROPERTIES AS EMBRYONIC STEM CELLS, AND THUS CAN BE USED TO DERIVE ANY MATURE CELL TYPE, BUT WOULD BE FROM A PATIENT AND THEREFORE NOT REJECTED IF TRANSPLANTED. USING THIS TECHNOLOGY, DR. PEBAY HAS SUCCESSFULLY DERIVED IPSCS FROM FRDA PATIENTS . THESE CELLS ARE NOW BEING USED TO GENERATE CELL TYPES PRIMARILY AFFECTED IN FRDA. A REASON FOR GENERATING IPSCS IS OF COURSE FOR ASSESSMENT OF TRANSPLANTATION POTENCY, BUT ANOTHER REASON IS FOR DRUG SCREENING OF POTENT MOLECULES TO INCREASE FRATAXIN (FXN) LEVELS IN AFFECTED CELLS. DR. PEBAY HAS DEVELOPED EFFICIENT PROTOCOLS TO GENERATE HIGH NUMBERS OF INDUCED PLURIPOTENT STEM CELL (IPSC)-DERIVED HEART CELLS, WHICH CAN BE USED TO ASSESS DISEASE-SPECIFIC PHENOTYPES AND SUBSEQUENTLY AS A DRUG-SCREENING PLATFORM FOR RESCUE OF IDENTIFIED PATHOGENIC SIGNATURES. DR. PEBAY HAS IDENTIFIED A DISTINCT PHENOTYPE IN HEART CELLS WITH LOW FXN LEVELS (DERIVED FROM PEOPLE WITH FRDA). SHE WILL NOW AIM TO IDENTIFY SPECIFIC CELLULAR PROFILES, CONFIRM THESE ARE PATHOGNOMONIC FOR FRDA AND RESTORE NORMAL FUNCTION BY VARIOUS CELLULAR AND MOLECULAR APPROACHES. ADDITIONALLY, SHE WILL ALSO SCREEN COMPOUNDS THAT SHOULD INCREASE FXN LEVELS IN FRDA-CARDIOMYOCYTES. THE OUTCOME OF THIS WORK WILL BE THE CLEAR IDENTIFICATION OF A HEART-SPECIFIC PROFILE IN PATIENT-SPECIFIC CELLS AS WELL AS THE GENERATION OF A DRUG-SCREENING PLATFORM, WHICH WILL ENABLE THE IDENTIFICATION, SCREENING AND SAFETY PROFILE DETERMINATION OF NEW TREATMENTS FOR THIS DEVASTATING DISEASE.
4b (Code:   ) (Expenses $ 176,964 including grants of $ 5,000 ) (Revenue $   )
RESEARCH CONFERENCES: FARA ORGANIZES AND SUPPORTS A NUMBER OF SCIENTIFIC CONFERENCES TO IMPROVE SHARING OF KNOWLEDGE, INSIGHTS AND ADVANCES AND BUILD COLLABORATIONS AND SYNERGISTIC CONNECTIONS BETWEEN FA RESEARCHERS. MARCH 2015- THE INTERNATIONAL ATAXIA RESEARCH CONFERENCE (IARC) HOSTED BY FARA, ATAXIA UK, ATAXIA IRELAND, AND GOFAR (ITALY) IN WINDSOR, UK WAS THE LARGEST ATAXIA RESEARCH CONFERENCE EVER HELD IN BOTH NUMBER OF PARTICIPATING DELEGATES (300+) AND SCIENTIFIC PRESENTATIONS. THE POWERFUL INTERNATIONAL PARTNERSHIP BETWEEN THE ADVOCACY GROUPS TO PLAN AND SPONSOR THE CONFERENCE WAS REFLECTED IN THE GLOBAL COLLABORATION SEEN BETWEEN LEADING ATAXIA SCIENTISTS, WITH MANY DIFFERENT LAB GROUPS HOLDING ONGOING DISCUSSIONS ABOUT DATA, TECHNIQUES, AND FUTURE COLLABORATIONS OVER THE 4-DAY CONFERENCE. THE FA RESEARCH COMMUNITY WAS IN STRONG ATTENDANCE, AS THE MAJORITY OF SCIENTISTS FARA FUNDED BETWEEN 2012-2014 WERE PRESENT TO GIVE EXCELLENT ORAL PRESENTATIONS OR POSTER PRESENTATIONS. THE LARGEST AND MOST WELL ATTENDED SESSION DURING THE CONFERENCE WAS ON DRUG DISCOVERY AND EMERGING THERAPIES, WHERE 7 ACADEMIC AND PHARMACEUTICAL REPRESENTATIVES PRESENTED THEIR ONGOING WORK IN DEVELOPING TREATMENTS FOR FA. BEFORE THE CONFERENCE BEGAN, FARA HOSTED A SPECIAL BIOMARKER MEETING WITH OVER 50 REPRESENTATIVES FROM INDUSTRY AND ACADEMIC INSTITUTIONS MAKING CONTINUED PROGRESS IN NEUROLOGICAL, CARDIAC, GENETIC, AND METABOLIC BIOMARKERS. THE PATIENT COMMUNITY WAS WELL-REPRESENTED THROUGHOUT THE CONFERENCE, WITH TALKS FROM PEOPLE LIVING WITH ATAXIA FROM AROUND THE WORLD, AS WELL AS SLIDESHOWS FEATURING PEOPLE WITH ATAXIA. IN NOVEMBER 2015, FARA ORGANIZED A MOUSE MODEL AND BIOMAKER MEETING WITH MORE THAN 70 ATTENDEES FROM THE RESEARCH COMMUNITY (ACADEMIC, PHARMA AND GOVERNMENT). UNPUBLISHED NEW DATA ON THREE NEW FA MOUSE MODELS WERE PRESENTED ALONG WITH RESEARCH TO FURTHER INTERROGATE EXISTING MODELS WITH NOVEL IMAGING TECHNIQUES AND THE DEVELOPMENT OF NEURONAL CELL LINES. AT PRESENT THERE ARE SEVERAL USEFUL MOUSE MODELS AVAILABLE. CONTINUED WORK ON DEVELOPING AN FA MOUSE WITH LONGER HUMAN REPEATS, BOTH THROUGH EFFORTS AT JACKSON LABS AND THROUGH BREEDING OF THE YG8SR MICE REMAINS IMPORTANT. THE NEW INDUCIBLE KNOCK-DOWN MOUSE DEVELOPED AT UCLA LOOKS TO BE VERY USEFUL, AND SHOULD BE TESTED IN FURTHER DETAIL IN TERMS OF STUDYING THE EFFECTS OF FRATAXIN RESTORATION. THE PUCCIO LAB AT IGBMC, STRASBOURG FR, HAS DEVELOPED A NOVEL CONDITIONAL KNOCK-OUT MODEL THAT DEVELOPS A NEURONAL FEATURES OF FA. THEY ARE BEGINNING TO LOOK AT SOME POTENTIAL BIOMARKERS IN MICE WHICH WOULD HAVE TRANSLATION TO HUMAN STUDIES, WHICH WILL BE VERY INFORMATIVE. THE BIOMARKER PORTION OF THE MEETING WAS IN FOLLOW-UP TO PREVIOUS MEETINGS THAT FARA HAS CONVENED TO FACILITATE COLLABORATIVE EXCHANGE AND RAPID SHARING OF INSIGHTS ON NOVEL BIOMARKER DEVELOPMENT. IN THE CARDIAC SESSION THERE WERE REPORTS FROM 5 GROUPS LOOKING AT VARIOUS CARDIAC BIOMARKERS INCLUDING SERUM BIOMARKERS, EXERCISE TOLERANCE, CARDIAC MRI, PET IMAGING AND ECHOCARDIOGRAPHY. IN THE MUSCLE AND METABOLIC SESSION THERE WERE PRESENTATIONS OF TWO NOVEL BIOMARKERS: CRCEST WHICH MEASURES THE AMOUNT OF PHOSPHOCREATINE IN THE MUSCLE (USING MRI) AT REST, AND THE RATE AT WHICH THE CREATINE LEVELS RECOVER FROM EXERCISE THESE MEASUREMENTS REFLECT THE RATE OF FLUX THROUGH OXIDATIVE PHOSPHORYLATION IN THE MITOCHONDRIA AND SERUM APO1A LEVELS IN FA PATIENTS. PILOT DATA IN BOTH STUDIES PRESENTED WERE ENCOURAGING. DATA WAS PRESENTED ON INSULIN RESISTENCE AND GLUCOSE TOLERANCE AND THE FINAL RECOMMENDATION WAS THAT THESE WOULD BE DIFFICULT MEASURES TO USE AS BIOMARKERS IN FUTURE STUDIES. SEVERAL GROUPS HAVE BEEN LOOKING FOR BIOMARKERS OF DISEASE PROGRESSION AND DRUG EFFECT USING GENE EXPRESSION BIOMARKERS IN FA. EACH HAS USED A UNIQUE SYSTEM TO LOOK FOR GLOBAL PATTERNS OF GENE EXPRESSION, THEN WORKED TO DETERMINE PATTERNS OF GENES THAT CHANGE WITH DISEASE. GIOVANNI COPPOLA FROM UCLA HAS USED A VERY LARGE COLLECTION OF RNA SAMPLES FROM BLOOD TO DEVELOP A PUBLICALLY AVAILABLE DATABASE WITH DATA FROM 1179 SAMPLES, INCLUDING PATIENTS, CONTROLS AND CARRIERS. THE FINAL SESSION OF NEUROLOGICAL BIOMARKERS FOCUSED ON UPDATES FROM SEVERAL ONGOING STUDIES EVALUATING STRUCTURAL AND FUNCTIONAL NEUROIMAGING TECHNIQUES, NEUROPHYSIOLOGICAL MEASURES, GAIT AND BALANCE MEASURES, AND OPHTHALMOLOGIC MEASURES. THERE IS GROWING EVIDENCE TO SUPPORT SEVERAL IMAGING MODALITIES - STRUCTURAL MRI AND MRS MEASUREMENTS APPEAR TO BE DISTINCTIVE AND CHANGE WITH TIME. MEASUREMENTS OF DOWNSTREAM CONSEQUENCES OF NEURONAL LOSS, SUCH AS VISION, GAIT AND BALANCE MEASUREMENTS, ARE LIKELY ALSO OF VALUE AND REQUIRE FURTHER STUDY. FINALLY, WE AWAIT MORE RESULTS FROM THE LARGE PANEL OF NEW BIOMARKERS BEING TESTED, TO SEE IF ANY OF THE PRELIMINARY DATA IS CONFIRMED AND CAN BE EXPANDED UPON. FARA WILL CONTINUE TO HOST BIOMARKER MEETINGS AT REGULAR INTERVALS TO FACILITATE RAPID SHARING OF DATA FROM ONGOING RESEARCH STUDIES.
4c (Code:   ) (Expenses $ 194,464 including grants of $   ) (Revenue $   )
EDUCATION, AWARENESS & OUTREACH PROGRAMS: FRIEDREICH'S ATAXIA (FA) IS A RARE DISEASE; AFFECTING 1 IN 50,000 INDIVIDUALS. FARA IS DEDICATED TO 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 CONDUCTED A SOCIAL MEDIA CAMPAIGN THAT ENCOURAGED COMMUNITY PARTICIPATION LEADING UP TO RARE DISEASE DAY AND FA AWARENESS DAY. FARA ALSO HOSTED WEBINARS TO INFORM THE COMMUNITY ABOUT THE LATEST DEVELOPMENTS IN FA RESEARCH AND SOME OF THE RESULTS OF FUNDED GRANTS.FARA CO-ORGANIZED THREE PATIENT SYMPOSIUMS WITH CLINICAL RESEARCH NETWORK SITES, CHILDREN'S HOSPITAL OF PHILADELPHIA (OCTOBER 12TH, 2015, KING OF PRUSSIA, PA), UNIVERSITY OF IOWA (MAY 2ND 2015, IOWA CITY, IA) AND UNIVERSITY OF SOUTH FLORIDA (SEPTEMBER 17TH 2015, TAMPA FL). THESE SYMPOSIUMS PROVIDE AN OPPORTUNITY TO EDUCATE THE PATIENT/FAMILY COMMUNITY ON RESEARCH ADVANCES, PROGRESS ON CLINICAL TRIALS AND A UNIQUE FORUM FOR PATIENTS AND RESEARCHERS TO ENGAGE AND LEARN FROM EACH OTHER'S EXPERIENCES AND PERSPECTIVES. COMBINED THESE SYMPOSIA ACCOMMODATED MORE THAN 450 ATTENDEES.THE FARA AMBASSADOR PROGRAM WHICH WAS LAUNCHED IN 2011 WITH >20 PARTICIPANTS HAD A YEAR OF CONTINUED GROWTH AND ACTIVITY IN 2015. THE PROGRAM NOW INCLUDES 35 PARTICIPANTS. THE MISSION OF THE FARA AMBASSADORS IS TO BE POSITIVE, SUPPORTIVE, PEER REPRESENTATIVES FOR THE FA COMMUNITY; ACTIVELY RAISING AWARENESS AND FUNDS FOR FARA.IN 2015, FARA FACILITATED ITS SECOND YEAR OF FORMAL TRAINING FOR THE AMBASSADOR LEADERSHIP TEAM AND AMBASSADORS. THE AMBASSADOR BLOG FEATURED POSTS SUCH AS COMMUNITY EVENT SUMMARIES, MEET THE COMMUNITY INTERVIEWS WITH PEOPLE LIVING WITH FA, AND COMMUNITY MEMBER SPOTLIGHTS. IN 2015, THEY ACHIEVED >100 POSTS WITH ~40,000 VIEWS. THE AMBASSADORS ALSO CONTINUED A CARD PROGRAM IN WHICH THEY DESIGNED CARDS TO SEND TO THE VARIOUS STAKEHOLDERS AND COMMUNITY MEMBERS THROUGHOUT THE YEAR TO SAY THANK YOU OR TO OFFER ENCOURAGEMENT. THEY ARE AVERAGING ABOUT 20 CARDS PER MONTH. ANOTHER PROJECT FACILITATED BY THE AMBASSADOR GROUP ARE MONTHLY PEER GOOGLE HANGOUT GROUPS FOR THE GREATER FA COMMUNITY TO ATTEND AND CONNECT WITH ONE ANOTHER ONLINE. FINALLY, THE AMBASSADORS HAVE CONTINUED IMPORTANT OUTREACH IN VISITING ACADEMIC LABORATORIES AND BIOPHARMACEUTICAL COMPANIES TO PROVIDE THE PATIENT PERSPECTIVE OF FA, AND SHARING THEIR PERSONAL EXPERIENCES AT FA SYMPOSIA.
(Code:   ) (Expenses $ 702,437 including grants of $ 651,114 ) (Revenue $   )
CCRN AND PATIENT REGISTRY: IN ADDITION TO RESEARCH GRANTS FARA FUNDS THE ONGOING DEVELOPMENT 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 CAN INCLUDE THINGS LIKE: PATIENT REGISTRY : THE ONLY INTERNATIONAL FRIEDREICH ATAXIA PATIENT REGISTRY WITH MORE THAN 2200 INDIVIDUALS ENROLLED. THIS REGISTRY CAPTURES DEMOGRAPHIC AND CLINICAL INFORMATION ON INDIVIDUALS WITH FA AND IS USED TO RECRUIT INDIVIDUALS FOR CLINICAL TRIALS WORLD WIDE. IN 2015, THE PATIENT REGISTRY WAS USED TO RECRUIT FOR 3 CLINICAL TRIALS AND SEVERAL OTHER CLINICAL RESEARCH STUDIES. FARA PATIENT REGISTRY : WWW.CUREFA.NET/REGISTRYCOLLABORATIVE CLINICAL RESEARCH NETWORK IN FA (CCRN IN FA): AN INTERNATIONAL NETWORK OF 10 CLINICAL RESEARCH CENTERS THAT WORK TOGETHER TO ADVANCE TREATMENTS AND CLINICAL CARE FOR INDIVIDUALS WITH FRIEDREICH'S ATAXIA. HAVING SUCH A NETWORK MEANS THAT THERE ARE TRAINED PHYSICIANS AND RESEARCH COORDINATORS READY TO DO CLINICAL RESEARCH STUDIES AND TRIALS. ALSO, THIS NETWORK IS BACKED BY A DATA COORDINATION CENTER THAT FACILITATES ALL ASPECTS OF DATA COLLECTION, DATABASE MANAGEMENT, AND STATISTICAL ANALYSIS OF STUDY DATA. TO LEARN MORE, VISIT WWW.CUREFA.ORG/NETWORK.HTMLNATURAL HISTORY STUDY: LONGITUDINAL DATA (USUALLY ABOUT 10 YEARS) ON INDIVIDUALS WITH A DISEASE THAT DESCRIBES AND QUANTIFIES THE PROGRESSION OF THE DISEASE ALONG WITH THE SYMPTOMS AND MANIFESTATIONS OF THE DISEASE. NATURAL HISTORY CAN SOMETIMES SERVE AS THE BASIS FROM WHICH MEASUREMENTS CAN BE MADE TO DETERMINE EFFECTS OF NEW TREATMENTS, DRUGS OR INTERVENTIONS.CLINICAL OUTCOME MEASURES : FUNCTIONAL PERFORMANCE TESTS (E.G., TIMED PEGBOARD OR WALK TESTS, VISION, HEARING OR SPEECH TESTS) THAT QUANTIFY HOW MUCH CHANGE TAKES PLACE IN A SPECIFIC AMOUNT OF TIME AND ARE USED IN CLINICAL TRIALS TO MEASURE WHETHER A DRUG IS ALTERING THE COURSE OF THE DISEASE.BIOMARKERS: ANYTHING THAT CAN BE USED AS AN INDICATOR OF A PARTICULAR DISEASE STATE - USUALLY PROTEINS, ENZYMES, GENETIC VARIANTS, IMAGING (MRI, CT OR PET SCANS). BIOMARKERS CAN BE USED TO ASSESS RISK OF DISEASE, DIAGNOSIS, OR OUTCOMES. USE OF BIOMARKERS IN DRUG DEVELOPMENT IS OF GREAT INTEREST BECAUSE BIOMARKERS CAN PROVIDE EVIDENCE OF BIOLOGICAL ACTIVITY, POTENTIALLY DEMONSTRATING THERAPEUTIC BENEFIT MORE QUICKLY THAN TRADITIONAL OUTCOME MEASURES. BIOREPOSITORY: A REPOSITORY OR BANK OF STORED BIOLOGICAL MATERIALS SUCH AS BLOOD SAMPLES, DNA, ORGANS, AND TISSUES (SUCH AS SKIN, MUSCLE, HEART) THAT CAN BE USED FOR RESEARCH.THROUGH THE CCRN IN FA WE HAVE COLLECTED TEN YEARS OF NATURAL HISTORY DATA (ONGOING) IN MORE THAN 850 INDIVIDUALS WITH FA, VALIDATED CLINICAL OUTCOME MEASURES AND THE FARS SCALE, STUDIED SPEECH, VISION AND HEARING, LAUNCHED BIOMARKER STUDIES, ESTABLISHED DNA AND RNA REPOSITORIES, AND PROVIDED MANY BLOOD SAMPLES TO RESEARCHERS AROUND THE WORLD. THE CCRN IN FA INVESTIGATORS HAVE BEEN INVOLVED IN MULTIPLE CLINICAL TRIALS INCLUDING A FEW THAT WERE DESIGNED AND CONDUCTED SOLELY THROUGH NETWORK SITES.FARA CONTRIBUTED MORE THAN $550,000 IN 2015 TO CLINICAL RESEARCH INFRASTRUCTURE IN DIRECT FUNDING TO THE CCRN IN FA CENTERS AND RELATED CLINICAL RESEARCH ACTIVITIES.
4d Other program services (Describe in Schedule O.)
(Expenses $ 702,437 including grants of $ 651,114 ) (Revenue $   )
4e Total program service expensesMediumBullet5,435,319
Form 990 (2015)
Form 990 (2015)
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.....................
1
Yes
 
2
Is the organization required to complete Schedule B, Schedule of Contributors (see instructions)? Click to see attachment...
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.............
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..............
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 Revenue Procedure 98-19? If "Yes," complete Schedule C, Part IIIClick to see attachment.................
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..................
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...
7
 
No
8
Did the organization maintain collections of works of art, historical treasures, or other similar assets? If "Yes," complete Schedule D, Part III Click to see attachment.............
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..............
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 VClick to see attachment......
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...................
11a
Yes
 
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.......
11b
 
No
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.......
11c
Yes
 
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............
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
11e
 
No
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
11f
Yes
 
12a
Did the organization obtain separate, independent audited financial statements for the tax year?
If "Yes," complete Schedule D, Parts XI and XII Click to see attachment.................
12a
Yes
 
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
12b
 
No
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
 
No
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
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
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
16
 
No
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
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
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
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
 
 
Form 990 (2015)
Form 990 (2015)
Page 4
Part IV
Checklist of Required Schedules (continued)
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
21
Yes
 
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
22
 
No
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.......................
23
 
No
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, 6, or 22 for receivables from or payables to any current or former officers, directors, trustees, key employees, highest compensated employees, or disqualified persons? If "Yes," complete Schedule L, Part II ................
26
 
No
27
Did the organization provide a grant or other assistance to an officer, director, trustee, key employee, substantial contributor or employee thereof, a grant selection committee member, or to a 35% controlled entity 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 Schedule L, Part IV instructions for applicable filing thresholds, conditions, and exceptions):
a
A current or former officer, director, trustee, or key employee? If "Yes," complete Schedule L,
Part IV ........................
28a
 
No
b
A family member of a current or former officer, director, trustee, or key employee? If "Yes," complete Schedule L, Part IV.....................
28b
 
No
c
An entity of which a current or former officer, director, trustee, or key employee (or a family member thereof) was an officer, director, trustee, or direct or indirect owner? 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
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
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 ........
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.........................
34
 
No
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.............
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 VI
37
 
No
38
Did the organization complete Schedule O and provide explanations in Schedule O for Part VI, lines 11b and 19? Note. All Form 990 filers are required to complete Schedule O. ............
38
Yes
 
Form 990 (2015)
Form 990 (2015)
Page 5
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
5
b
Enter the number of Forms W-2G included in 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
 
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
8
b
If at least one is reported on line 2a, did the organization file all required federal employment tax returns?
Note. If the sum of lines 1a and 2a is greater than 250, you may be required to e-file (see instructions)
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: MediumBullet
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
 
 
9a
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
 
 
Form 990 (2015)
Form 990 (2015)
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
18
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 in 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 in 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 in 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 filedMediumBullet
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 (or 1024 if applicable), 990, and 990-T (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:
MediumBulletJENNIFER FARMER533 W UWCHLAN AVENUE   DOWNINGTOWN,PA19335 (484) 879-6160
Form 990 (2015)
Form 990 (2015)
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 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 and/or Box 7 of Form 1099-MISC) 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.

List persons in the following order: individual trustees or directors; institutional trustees; officers; key employees; highest
compensated employees; and former such persons.
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) 		(E)
Reportable compensation from related organizations (W- 2/1099-MISC) 		(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) EDWARD RAMSEY......................................................................
DIRECTOR
 0.00
.................
  		X           0 0 0
(2) MARILYN E DOWNING......................................................................
SECRETARY
 0.00
.................
  		X   X       0 0 0
(3) RUTH DEWITT......................................................................
TREASURER
 0.00
.................
  		X   X       0 0 0
(4) JENNIFER GOOD......................................................................
DIRECTOR
 0.00
.................
  		X           0 0 0
(5) PAUL AVERY......................................................................
CHAIRMAN
 0.00
.................
  		X   X       0 0 0
(6) PETER CRISP......................................................................
DIRECTOR
 0.00
.................
  		X           0 0 0
(7) DR HOLLY HEDRICK......................................................................
DIRECTOR
 0.00
.................
  		X           0 0 0
(8) GEOFFREY LEVITT......................................................................
DIRECTOR
 0.00
.................
  		X           0 0 0
(9) STEVE KLASKO......................................................................
DIRECTOR
 0.00
.................
  		X           0 0 0
(10) BILL ALEFANTIS......................................................................
DIRECTOR
 0.00
.................
  		X           0 0 0
(11) THOMAS HAMILTON......................................................................
DIRECTOR
 0.00
.................
  		X           0 0 0
(12) BERNARD RAVINA......................................................................
SCIENTIFIC DIRECTOR
 0.00
.................
  		X           0 0 0
(13) DR SANJAY BIDICHANDANI......................................................................
SCIENTIFIC DIRECTOR
 0.00
.................
  		X           0 0 0
(14) VINCENT R GIANNINI......................................................................
DIRECTOR
 0.00
.................
  		X           0 0 0
(15) DR JAMES MCARTHUR......................................................................
DIRECTOR
 0.00
.................
  		X           0 0 0
(16) TONY PLOHOROS......................................................................
DIRECTOR
 0.00
.................
  		X           0 0 0
(17) PAT RITSCHEL......................................................................
DIRECTOR
 0.00
.................
  		X           0 0 0
Form 990 (2015)
Form 990 (2015)
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) 		(E)
Reportable compensation from related organizations (W- 2/1099-MISC) 		(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) RONALD BARTEK........................................................................
PRESIDENT/DIRECTOR
 40.00
.......................   		X   X       135,000 0 180
(19) JENNIFER FARMER........................................................................
EXECUTIVE DIRECTOR
 40.00
.......................   		    X       104,102 0 180






















1b Sub-Total................MediumBullet
c Total from continuation sheets to Part VII, Section A....MediumBullet
d Total (add lines 1b and 1c)...........MediumBullet 239,102 0 360
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 MediumBullet2
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
 
No
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
2
Total number of independent contractors (including but not limited to those listed above) who received more than $100,000 of compensation from the organization MediumBullet0
Form 990 (2015)
Form 990 (2015)
Page 9
Part VIII
Statement of Revenue
Check if Schedule O contains a response or note to any line in this Part VIII .............
(A)
Total revenue 		(B)
Related or
exempt
function
revenue 		(C)
Unrelated
business
revenue 		(D)
Revenue
excluded from
tax under sections
512-514
Contributions, Gifts, GrantAmt and OtherAmt Similar Amounts 1a Federated campaigns..1a  
b Membership dues..1b  
c Fundraising events..1c 2,912,272
d Related organizations1d  
e Government grants (contributions)1e  
f All other contributions, gifts, grants, and similar amounts not included above1f 2,788,851
g Noncash contributions included in lines 1a-1f:$  
h Total.Add lines 1a-1f.......MediumBullet 5,701,123
Program Service RevenueAmt Business Code
2a
b
c
d
e
f All other program service revenue.        
g Total.Add lines 2a–2f.....MediumBullet  
OtherAmt RevenueAmt 3 Investment income (including dividends, interest, and othersimilar amounts) ..........MediumBullet 19,755     19,755
4 Income from investment of tax-exempt bond proceedsMediumBullet        
5 Royalties...........MediumBullet        
(ii) Personal (i) Real
6a Gross rents    
b Less: rental expenses    
c Rental income or (loss)    
d Net rental income or (loss)......MediumBullet        
(ii) Other (i) Securities
7a Gross amount from sales of assets other than inventory   862,291
b Less: cost or other basis and sales expenses   862,619
c Gain or (loss)   -328
d Net gain or (loss).....MediumBullet -328     -328
8a Gross income from fundraising events (not including $ 2,912,272of contributions reported on line 1c). See Part IV, line 18 ....
a 634,961
b Less: direct expenses ...b 637,366
c Net income or (loss) from fundraising events..MediumBullet -2,405   -2,405
9a Gross income from gaming activities.
See Part IV, line 19 ...
a  
b Less: direct expenses ...b  
c Net income or (loss) from gaming activities..MediumBullet        
10a Gross sales of inventory, less
returns and allowances ..
a  
b Less: cost of goods sold ..b  
c Net income or (loss) from sales of inventory..MediumBullet        
Business Code Miscellaneous Revenue
11a            
b            
c            
d All other revenue ....        
e Total. Add lines 11a–11d ...... MediumBullet  
12 Total revenue. See Instructions......MediumBullet 5,718,145 0 0 17,022
Form 990 (2015)
Form 990 (2015)
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 3,994,527 3,994,527
2 Grants and other assistance to individuals in the United States. See Part IV, line 22    
3 Grants and other assistance to governments, organizations, and individuals outside the United States. See Part IV, lines 15 and 16 756,139 756,139
4 Benefits paid to or for members    
5 Compensation of current officers, directors, trustees, and key employees .... 257,421 198,698 18,503 40,220
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 246,042 194,254 16,304 35,484
8 Pension plan accruals and contributions (include section 401(k) and 403(b) employer contributions) ....        
9 Other employee benefits .......        
10 Payroll taxes ...........        
11 Fees for services (non-employees):        
a Management ......        
b Legal ......... 86,893 82,933 3,960  
c Accounting ........... 12,000   12,000  
d Lobbying ...........        
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) 14,952 8,868 84 6,000
12 Advertising and promotion .... 2,699 2,699    
13 Office expenses ....... 27,514 14,913 11,146 1,455
14 Information technology ......        
15 Royalties ..        
16 Occupancy ........... 25,381 14,503 3,626 7,252
17 Travel ............ 121,583 111,488 11,124 -1,029
18 Payments of travel or entertainment expenses for any federal, state, or local public officials .        
19 Conferences, conventions, and meetings .... 49,503 48,620 883  
20 Interest ...........        
21 Payments to affiliates .......        
22 Depreciation, depletion, and amortization .. 1,316   1,316  
23 Insurance ... 5,282   3,730 1,552
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 BOOKS, SUBSCRIPTIONS & 6,734 5,387 1,347  
b CREDIT CARD & BANK FEES 5,850 140 1,723 3,987
c BUSINESS REGISTRATION F 3,817 50 480 3,287
d MISCELLANEOUS 2,300 2,100 200 0
e All other expenses 1,843   1,843  
25 Total functional expenses. Add lines 1 through 24e 5,621,796 5,435,319 88,269 98,208
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 MediumBullet if following SOP 98-2 (ASC 958-720).        
Form 990 (2015)
Form 990 (2015)
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 ........ 961,837 1 1,004,180
2 Savings and temporary cash investments ......... 973,135 2 484,112
3 Pledges and grants receivable, net ...... 111,200 3 138,397
4 Accounts receivable, net .............   4  
5 Loans and other receivables from current and former officers, directors, trustees, key employees, and highest compensated employees. Complete Part II of Schedule L
  5  
6 Loans and other receivables from other disqualified persons (as defined under section 4958(f)(1)), persons described in section 4958(c)(3)(B), and contributing employers and sponsoring organizations of section 501(c)(9) voluntary employees' beneficiary organizations (see instructions) Complete Part II of Schedule L
  6  
7 Notes and loans receivable, net ....   7  
8 Inventories for sale or use ........   8  
9 Prepaid expenses and deferred charges ...... 3,260 9 9,411
10a Land, buildings, and equipment: cost or other basis. Complete Part VI of Schedule D 10a 7,135
b Less: accumulated depreciation 10b 3,997 2,323 10c 3,138
11 Investments—publicly traded securities . 868,679 11 1,326,392
12 Investments—other securities. See Part IV, line 11 .....   12  
13 Investments—program-related. See Part IV, line 11 .. 1,091,500 13 1,091,500
14 Intangible assets ...............   14  
15 Other assets. See Part IV, line 11 ...........   15  
16 Total assets. Add lines 1 through 15 (must equal line 34)... 4,011,934 16 4,057,130
Liabilities 17 Accounts payable and accrued expenses ..... 290,640 17 289,961
18 Grants payable ...   18  
19 Deferred revenue .........   19  
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 current and former officers, directors, trustees, key employees, highest compensated employees, and disqualified
persons. Complete Part II of Schedule L..   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   25  
26 Total liabilities. Add lines 17 through 25.. 290,640 26 289,961
Net Assets or Fund Balance Organizations that follow SFAS 117 (ASC 958), check here MediumBullet and complete lines 27 through 29, and lines 33 and 34.
27 Unrestricted net assets 3,393,277 27 3,604,380
28 Temporarily restricted net assets ........... 328,017 28 162,789
29 Permanently restricted net assets   29  
Organizations that do not follow SFAS 117 (ASC 958), check here MediumBullet and complete lines 30 through 34.
30 Capital stock or trust principal, or current funds .....   30  
31 Paid-in or capital surplus, or land, building or equipment fund ...   31  
32 Retained earnings, endowment, accumulated income, or other funds   32  
33 Total net assets or fund balances ........... 3,721,294 33 3,767,169
34 Total liabilities and net assets/fund balances ........ 4,011,934 34 4,057,130
Form 990 (2015)
Form 990 (2015)
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
5,718,145
2
Total expenses (must equal Part IX, column (A), line 25) ............
2
5,621,796
3
Revenue less expenses. Subtract line 2 from line 1 ..............
3
96,349
4
Net assets or fund balances at beginning of year (must equal Part X, line 33, column (A)) ..
4
3,721,294
5
Net unrealized gains (losses) on investments ...............
5
-50,474
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
0
10
Net assets or fund balances at end of year. Combine lines 3 through 9 (must equal Part X, line 33, column (B))
10
3,767,169
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 in
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 Single Audit Act and OMB Circular A-133?
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 (2015)
Form 990 (2015)
Additional Data


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

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 Information about Schedule A (Form 990 or 990-EZ) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2015
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 11, check only one box.)
1
2
3
4


5
6
7
8
9
10
11
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- 9 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 or 990-EZ) 2015

Schedule A (Form 990 or 990-EZ) 2015
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 fails 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) 2011 (b) 2012 (c) 2013 (d) 2014 (e) 2015 (f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any unusual grants.) .... 2,831,171 3,174,652 4,460,547 5,572,073 5,701,123 21,739,566
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 2,831,171 3,174,652 4,460,547 5,572,073 5,701,123 21,739,566
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).. 2,037,938
6 Public support. Subtract line 5 from line 4. 19,701,628
Section B. Total Support
Calendar year (or fiscal year beginning in) right arrow (a) 2011 (b) 2012 (c) 2013 (d) 2014 (e) 2015 (f) Total
7 Amounts from line 4.. 2,831,171 3,174,652 4,460,547 5,572,073 5,701,123 21,739,566
8 Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... 12,704 21,555 9,955 14,051 19,755 78,020
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. 21,817,586
12
12
 
13
First five 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
90.300 %
15
15
93.960 %
16a
b
17a
b
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 or 990-EZ) 2015

Schedule A (Form 990 or 990-EZ) 2015
Page 3
Part III
Support Schedule for Organizations Described in Section 509(a)(2)
(Complete only if you checked the box on line 9 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) 2011 (b) 2012 (c) 2013 (d) 2014 (e) 2015 (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) 2011 (b) 2012 (c) 2013 (d) 2014 (e) 2015 (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 in 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
Section C. Computation of Public Support Percentage
15
15
 
16
16
 
Section D. Computation of Investment Income Percentage
17
17
 
18
18
 
19a
b
20
Schedule A (Form 990 or 990-EZ) 2015

Schedule A (Form 990 or 990-EZ) 2015
Page 4
Part IV
Supporting Organizations
(Complete only if you checked a box on line 11 of Part I. If you checked 11a of Part I, complete Sections A and B. If you checked 11b of Part I, complete Sections A and C. If you checked 11c of Part I, complete Sections A, D, and E. If you checked 11d 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 (b) and (c) 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 11a or 11b in Part I, answer (b) and (c) 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 (b) and (c) 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 or 990-EZ) .
7
 
 
8
Did the organization make a loan to a disqualified person (as defined in section 4958) not described in line 7? If “Yes,” complete Part I of Schedule L (Form 990 or 990-EZ).
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 in 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 in 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 or 990-EZ) 2015

Schedule A (Form 990 or 990-EZ) 2015
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 in (b) and (c) below, the governing body of a supported organization?
11a
 
 
b
A family member of a person described in (a) above?
11b
 
 
c
A 35% controlled entity of a person described in (a) or (b) above? If “Yes” to a, b, or c, provide detail in Part VI.
11c
 
 
Section B. Type I Supporting Organizations
Yes
No
1
Did the 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 (2), 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 (a) and (b) 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 in (a) 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 (a) and (b) 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? 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 or 990-EZ) 2015

Schedule A (Form 990 or 990-EZ) 2015
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 1-1/2% 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 .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 or 990-EZ) 2015

Schedule A (Form 990 or 990-EZ) 2015
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  
2 Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in
excess of income from activity		  
3 Administrative expenses paid to accomplish exempt purposes of supported organizations  
4 Amounts paid to acquire exempt-use assets  
5 Qualified set-aside amounts (prior IRS approval required)  
6 Other distributions (describe in Part VI). See instructions  
7Total annual distributions. Add lines 1 through 6.  
8 Distributions to attentive supported organizations to which the organization is responsive (provide
details in Part VI). See instructions		  
9 Distributable amount for 2015 from Section C, line 6  
10 Line 8 amount divided by Line 9 amount  

Section E - Distribution Allocations (see instructions) (i)
Excess Distributions 		(ii)
Underdistributions
Pre-2015 		(iii)
Distributable
Amount for 2015
1 Distributable amount for 2015 from Section C, line
6 		 
2 Underdistributions, if any, for years prior to 2015
(reasonable cause required--see instructions)		  
3 Excess distributions carryover, if any, to 2015:
a
b
c
d From 2013.......  
e From 2014.......  
fTotal of lines 3a through e  
g Applied to underdistributions of prior years  
h Applied to 2015 distributable amount  
i Carryover from 2010 not applied (see
instructions)
j Remainder. Subtract lines 3g, 3h, and 3i from 3f.  
4Distributions for 2015 from Section D, line 7:
$  
a Applied to underdistributions of prior years  
b Applied to 2015 distributable amount  
c Remainder. Subtract lines 4a and 4b from 4.  
5 Remaining underdistributions for years prior to
2015, if any. Subtract lines 3g and 4a from line 2
(if amount greater than zero, see instructions)		  
6 Remaining underdistributions for 2015. Subtract
lines 3h and 4b from line 1 (if amount greater than
zero, see instructions)		  
7 Excess distributions carryover to 2016. Add lines
3j and 4c.		  
8 Breakdown of line 7:
a
b
c Excess from 2013.......  
d From 2014.......  
e From 2015.......  
Schedule A (Form 990 or 990-EZ) (2015)

Schedule A (Form 990 or 990-EZ) 2015
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 or 990-EZ) 2015


Additional Data


Software ID:  
Software Version:  
Schedule B
(Form 990, 990-EZ,
or 990-PF)
Department of the Treasury
Internal Revenue Service
Schedule of Contributors
Arrow Bullet Attach to Form 990, 990-EZ, or 990-PF.
Arrow Bullet Information about Schedule B (Form 990, 990-EZ, or 990-PF) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2015
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





Form 990-PF




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
Special Rules
......... Arrow Bullet $  
Caution. An organization that is not covered by the General Rule and/or the Special Rules does not 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 does not 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, 990-EZ, or 990-PF) (2015)
Schedule B (Form 990, 990-EZ, or 990-PF) (2015) 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, 990-EZ, or 990-PF) (2015)
Schedule B (Form 990, 990-EZ, or 990-PF) (2015)
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, 990-EZ, or 990-PF) (2015)
Schedule B (Form 990, 990-EZ, or 990-PF) (2015)
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 $1,000 or less for the year. (Enter this information once. See instructions.) Arrow Bullet$  
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, 990-EZ, or 990-PF) (2015)

Additional Data


Software ID:  
Software Version:  
SCHEDULE C
(Form 990 or 990-EZ)

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
SchCMd Bullet Complete if the organization is described below. SchCMd Bullet Attach to Form 990 or Form 990-EZ.
SchCMd BulletInformation about Schedule C (Form 990 or 990-EZ) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2015
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.
2
Political expenditures ......................................................................................................................SchCMd Bullet
$  
3
Volunteer hours .............................................................................................................................
 

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 ................................SchCMd Bullet
$ 0
2
Enter the amount of any excise tax incurred by organization managers under section 4955 .......................SchCMd Bullet
$ 0
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 ..... SchCMd Bullet
$  
2
Enter the amount of the filing organization's funds contributed to other organizations for section 527 exempt function activities ............................................................................................................................SchCMd Bullet

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

$  
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 or 990-EZ.
Cat. No. 50084S
Schedule C (Form 990 or 990-EZ) 2015

Schedule C (Form 990 or 990-EZ) 2015
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 SchCMd Bulletexpenses, and share of excess lobbying expenditures).
B Check SchCMd Bullet
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) ............................................... 4,731  
b Total lobbying expenditures to influence a legislative body (direct lobbying) ........................................... 3,375  
c Total lobbying expenditures (add lines 1a and 1b) ....................................................................... 8,106  
d Other exempt purpose expenditures ......................................................................................... 6,162,483  
e Total exempt purpose expenditures (add lines 1c and 1d) .................................................................... 6,170,589  
f Lobbying nontaxable amount. Enter the amount from the following table in both
columns.		 458,529  
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) .......................................................................... 114,632  
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) 2012 (b) 2013 (c) 2014 (d) 2015 (e) Total
2a Lobbying nontaxable amount 302,630 350,101 423,349 458,529 1,534,609
b Lobbying ceiling amount
(150% of line 2a, column(e)) 		2,301,914
c Total lobbying expenditures 9,100 9,100 9,100 8,106 35,406
d Grassroots nontaxable amount 75,658 87,525 105,837 114,632 383,652
e Grassroots ceiling amount
(150% of line 2d, column (e))		 575,478
f Grassroots lobbying expenditures 5,100 5,100 5,100 4,731 20,031
Schedule C (Form 990 or 990-EZ) 2015


Schedule C (Form 990 or 990-EZ) 2015
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)
No
Yes
(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 or 990EZ) 2015


Additional Data


Software ID:  
Software Version:  

SCHEDULE D
(Form 990)
Department of the Treasury
Internal Revenue Service
Supplemental Financial Statements
SchDMd Bullet 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.
SchDMd Bullet Attach to Form 990.
Information about Schedule D (Form 990) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2015
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 8/17/06, 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 SchDMd Bullet  
4
Number of states where property subject to conservation easement is located SchDMd Bullet  
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
SchDMd Bullet  
7
Amount of expenses incurred in monitoring, inspecting, handling of violations, and enforcing conservation easements during the year
SchDMd Bullet $  
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 SFAS 116 (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 SFAS 116 (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 .........................SchDMd Bullet $  
(ii)
Assets included in Form 990, Part X ...............................SchDMd Bullet $  
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 SFAS 116 (ASC 958) relating to these items:
a
Revenue included on Form 990, Part VIII, line 1 ..........................SchDMd Bullet $  
b
Assets included in Form 990, Part X ...............................SchDMd Bullet $  
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 52283D
Schedule D (Form 990) 2015

Schedule D (Form 990) 2015
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 SchDMd Bullet  
b
Permanent endowment SchDMd Bullet  
c
Temporarily restricted endowment SchDMd Bullet  
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 ...   7,135 3,997 3,138
Total. Add lines 1a through 1e. (Column (d) must equal Form 990, Part X, column (B), line 10(c).)..SchDMdBullet 3,138
Schedule D (Form 990) 2015

Schedule D (Form 990) 2015
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)
(B)
(C)
(D)
(E)
(F)
(G)
(H)
Total. (Column (b) must equal Form 990, Part X, col. (B) line 12.)Small Bullet  
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)INVESTMENT IN EDISON PHARMACEUTICALS, INC. 1,091,500 C
(1)
(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 13.)Small Bullet 1,091,500
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.)...........Small Bullet  
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  
(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 25.)Small Bullet  
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) 2015

Schedule D (Form 990) 2015
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 6,305,037
2 Amounts included on line 1 but not on Form 990, Part VIII, line 12:
a Net unrealized gains (losses) on investments .... 2a -50,474
b Donated services and use of facilities ......... 2b  
c Recoveries of prior year grants ........... 2c  
d Other (Describe in Part XIII.) ............ 2d 637,366
e Add lines 2a through 2d ..................... 2e 586,892
3 Subtract line 2e from line 1.................. 3 5,718,145
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 0
5 Total revenue. Add lines 3 and 4c. (This must equal Form 990, Part I, line 12.) ...... 5 5,718,145
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 6,259,162
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 637,366
e Add lines 2a through 2d.................... 2e 637,366
3 Subtract line 2e from line 1................... 3 5,621,796
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 0
5 Total expenses. Add lines 3 and 4c. (This must equal Form 990, Part I, line 18.) ...... 5 5,621,796

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: FARA BELIEVES IT HAS APPROPRIATE SUPPORT FOR ANY TAX POSITIONS TAKEN AND, AS SUCH, DOES NOT HAVE ANY UNCERTAIN TAX POSITIONS THAT ARE MATERIAL TO THE FINANCIAL STATEMENTS. FARA'S FEDERAL RETURN OF ORGANIZATION EXEMPT FROM INCOME TAX (FORM 990) FOR TAX YEARS 2012, 2013 AND 2014 IS SUBJECT TO EXAMINATION BY THE IRS, GENERALLY FOR THREE YEARS AFTER THE TAX RETURNS WERE FILED.
PART XI, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE
PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE
Schedule D (Form 990) 2015


Additional Data


Software ID:  
Software Version:  




SCHEDULE F(Form 990)
Department of the Treasury
Internal Revenue Service
Statement of Activities Outside the United States
Right pointing arrow large image Complete if the organization answered "Yes" to Form 990,Part IV, line 14b, 15, or 16.Right pointing arrow large image Attach to Form 990. Right pointing arrow large image See separate instructions.Right pointing arrow large image Information about Schedule F (Form 990) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2015
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" to 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 region (d) Activities conducted in region (by type) (e.g., 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 region		 (f) Total expenditures
for and investments
in region
EUROPE 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 399,036
EAST ASIA AND THE PACIFIC 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 357,103
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
3a Sub-total ..... 0 0 756,139
b Total from continuation sheets to Part I ... 0 0 0
c Totals (add lines 3a and 3b) 0 0 756,139
For Paperwork Reduction Act Notice, see the Instructions for Form 990.Cat. No. 50082W Schedule F (Form 990) 2015
Schedule F (Form 990) 2015
Page 2
Part II
Grants and Other Assistance to Organizations or Entities Outside the United States. Complete if the organization answered "Yes" to 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)		 (a)(c) Region (b)(d) Purpose of
grant 		(e) Amount of
cash grant 		(f) Manner of
cash
disbursement 		(g) Amount
of non-cash
assistance 		(h) Description
of non-cash
assistance 		(i) Method of
valuation
(book, FMV,
appraisal, other)
EUROPE MEDICAL RESEARCH 49,000 WIRE      
EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 125,008 WIRE      
EUROPE MEDICAL RESEARCH 182,399 WIRE      
EUROPE MEDICAL RESEARCH 138,132 WIRE      
EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 105,000 WIRE      
EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 122,095 WIRE      
EUROPE MEDICAL RESEARCH 29,505 WIRE      
SOUTH ASIA RESEARCH CONFERENCE 5,000 WIRE      
             
             
             
             
             
             
             
             
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
 
3 Enter total number of other organizations or entities .......................MediumBullet
 
Schedule F (Form 990) 2015
Schedule F (Form 990) 2015Page 3
Part III
Grants and Other Assistance to Individuals Outside the United States. Complete if the organization answered "Yes" to 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
non-cash
assistance 		(g) Description
of non-cash
assistance 		(h) Method of
valuation
(book, FMV,
appraisal, other)
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
Schedule F (Form 990) 2015
Schedule F (Form 990) 2015
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). . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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).. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Schedule F (Form 990) 2015
Schedule F (Form 990) 2015
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
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
Schedule F (Form 990) 2015
Additional Data


Software ID:  
Software Version:  



SCHEDULE G (Form 990 or 990-EZ)
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 arrowInformation about Schedule G (Form 990 or 990-EZ) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2015
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 ten 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 or 990-EZ) 2015
Schedule G (Form 990 or 990-EZ) 2015
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

RIDE ATAXIA PHILADELPHIA
(event type) 		(c) Other events

65
(total number) 		(d) Total events
(add col. (a) through col. (c))

1
Gross receipts . . . . .
1,624,342
263,867
1,659,024
3,547,233

2
Less: Contributions . . . .
1,113,266
246,867
1,552,139
2,912,272
3 Gross income (line 1 minus
line 2) . . . . . .
511,076
17,000
106,885
634,961



VerticalDirectExpenses
4 Cash prizes . . . . .        
5 Noncash prizes . . . .        
6 Rent/facility costs . . . .        
7 Food and beverages . . .        
8 Entertainment . . . .        
9 Other direct expenses . . . 235,152 49,702 352,512 637,366
10 Direct expense summary. Add lines 4 through 9 in column (d) . . . . . . . . . . right arrow 637,366
11 Net income summary. Subtract line 10 from line 3, column (d). . . . . . . . . . right arrow -2,405
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 . . .
235,152
49,702
352,512
637,366


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? . . . . . . . .
b
If "No," explain:
 
10a
Were any of the organization's gaming licenses revoked, suspended or terminated during the tax year? . . .
b
If "Yes," explain:
 
Schedule G (Form 990 or 990-EZ) 2015
Schedule G (Form 990 or 990-EZ) 2015
Page 3
11
Does the organization conduct gaming activities with nonmembers? . . . . . . . . . . .
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? . . . . . . . . . . . . . . . . .
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 complete this part to provide any additional information (see instructions).
Return Reference Explanation
Schedule G (Form 990 or 990-EZ) 2015
Additional Data


Software ID:  
Software Version:  
Schedule I
(Form 990)
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 Information about Schedule I (Form 990) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2015
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
non-cash assistance		 (h) Purpose of grant
or assistance
(1) UNIVERSITY OF ROCHESTER
515 HYLAN BUILDING RC BOX 270140
ROCHESTER,NY14627 		16-0743209 501(C)(3) 267,968       MEDICAL RESEARCH
(2) UNIVERSITY OF SOUTH FLORIDA FOUNDATION
4202 EAST FOWLER AVENUE
TAMPA,FL33620 		59-0879015 501(C)(3) 186,731       MEDICAL RESEARCH
(3) CHILDREN'S HOSPITAL OF PHILADELPHIA
34TH ST CIVIC CENTER BLVD
PHILADELPHIA,PA19104 		23-1352166 501(C)(3) 282,712       MEDICAL RESEARCH
(4) OHIO STATE UNIVERSITY
333 W 10TH AVE
COLUMBUS,OH43210 		31-6025986 501(C)(3) 5,200       MEDICAL RESEARCH
(5) SCRIPPS RESEARCH INSTITUTE
10550 NORTH TORREY PINES ROAD
OSP-TPC7
LA JOLLA,CA92037 		33-0435954 501(C)(3) 84,439       MEDICAL RESEARCH
(6) THE JACKSON LABORATORY
600 MAIN STREET
BAR HARBOR,ME04609 		01-0211513 501(C)(3) 21,360       MEDICAL RESEARCH
(7) THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES
10920 WILSHIRE BLVD 5TH FLOOR
LOS ANGELES,CA90024 		95-6006143 501(C)(3) 45,000       MEDICAL RESEARCH
(8) UNIVERSITY OF IOWA DEPT OF PEDIATRICS
200 HAWKINS DRIVE
IOWA CITY,IA52242 		42-6004813 501(C)(3) 4,000       MEDICAL RESEARCH
(9) THE TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA
3451 WALNUT STREET RM P 221
FRANKLIN BLDG
PHILADELPHIA,PA19104 		23-1352685 501(C)(3) 1,722,750       MEDICAL RESEARCH
(10) LSU HEALTH SCIENCE CENTER
433 BOLIVAR ST
NEW ORLEANS,LA70112 		72-6087770 501(C)(3) 111,488       MEDICAL RESEARCH
(11) REGENTS OF THE UNIVERSITY OF MINNESOTA
200 SE OAK ST 600
MINNEAPOLIS,MN55455 		41-6007513 501(C)(3) 149,500       MEDICAL RESEARCH
(12) WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY
445 E 69TH ST
NEW YORK,NY10021 		13-1623978 501(C)(3) 149,990       MEDICAL RESEARCH
(13) BAYLOR COLLEGE OF MEDICINE
1 BAYLOR PLAZA
HOUSTON,TX77030 		74-1613878 501(C)(3) 125,000       MEDICAL RESEARCH
(14) UNIVERSITY OF VIRGINIA
UVA HEALTH SYSTEM
CHARLOTTESVILLE,VA22908 		54-0485595 501(C)(3) 125,000       MEDICAL RESEARCH
(15) ARIZONA STATE UNIVERSITY
1711 S RURAL ROAD
TEMPE,AZ85287 		86-0196696 501(C)(3) 150,000       MEDICAL RESEARCH
(16) CATABASIS PHARMACEUTICALS INC
ONE KENDALL SQUARE SUITE B 14202
CAMBRIDGE,MA02139 		26-3687168   195,114       MEDICAL RESEARCH
(17) MASSACHUSETTS GENERAL HOSPITAL
55 FRUIT ST
BOSTON,MA02114 		04-2697983 501(C)(3) 50,000       MEDICAL RESEARCH
(18) PFIZER INC
235 EAST 42ND STREET
NEW YORK,NY10017 		13-5315170   75,000       MEDICAL RESEARCH
(19) RETROTOPE
12133 FOOTHILL LANE
LOS ALTOS HILLS,CA94022 		20-4958003   46,775       MEDICAL RESEARCH
(20) THE UNIVERSITY OF ALABAMA BIRMINGHAM
701 20TH STREET SOUTH
BIRMINGHAM,AL35294 		63-6005396 501(C)(3) 140,000       MEDICAL RESEARCH
(21) UNIVERSITY OF FLORIDA
DEPT OF NEUROLOGY L3-100 MCKNIGHT
BRAIN INSTITUTE NEWELL DRIVE
GAINESVILLE,FL32611 		59-6002052 501(C)(3) 33,900       MEDICAL RESEARCH
(22) EMORY UNIVERSITY
201 DOWMAN DR
ATLANTA,GA30322 		58-0566256 501(C)(3) 22,600       MEDICAL RESEARCH
2
Enter total number of section 501(c)(3) and government organizations listed in the line 1 table ................. Bullet Image
19
3
Enter total number of other organizations listed in the line 1 table ........................ . Bullet Image
3
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50055P
Schedule I (Form 990) 2015

Schedule I (Form 990) 2015
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
non-cash assistance		 (e) Method of valuation (book,
FMV, appraisal, other)		 (f) Description of non-cash assistance
(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.
Schedule I (Form 990) 2015



Additional Data


Software ID:  
Software Version:  


SCHEDULE M
(Form 990)

Department of the Treasury
Internal Revenue Service
Noncash Contributions
Right pointing arrow large imageComplete 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 imageInformation about Schedule M (Form 990) and its instructions is at www.irs.gov/form990
OMB No. 1545-0047
2015
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 5 196,103 MARKET PRICE
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 ( )
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 is not 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 non-standard contributions?
31
 
No
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 did not 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) (2015)
Schedule M (Form 990) (2015)
Page 2
Part II
Supplemental 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
Schedule M (Form 990) (2015)

Additional Data


Software ID:  
Software Version:  
SCHEDULE O
(Form 990 or 990-EZ)

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.
MediumBullet Attach to Form 990 or 990-EZ.
MediumBullet Information about Schedule O (Form 990 or 990-EZ) and its instructions is at
www.irs.gov/form990.
OMB No. 1545-0047
2015
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 2015 KYLE BRYANT TRANSLATIONAL RESEARCH AWARD, TITLE: EVALUATION OF CAT-4001 IN FRATAXIN-DEFICIENT MOUSE MODELS AND DRG NEURONS TO ENABLE ITS THERAPEUTIC DEVELOPMENT TO TREAT FRIEDREICH'S ATAXIA, PRINCIPAL INVESTIGATOR: DR. ANDREW NICHOLS, CATABASIS PHARMACEUTICALS IN FRIEDREICH'S ATAXIA (FRDA), THE DEFICIENCY OF FRATAXIN EXPRESSION LEADS TO OXIDATIVE STRESS THAT MAY PLAY A SIGNIFICANT ROLE IN DISEASE PATHOLOGY. IMPAIRED NUCLEAR TRANSLOCATION OF NRF2, A TRANSCRIPTION FACTOR WHICH REGULATES CELLULAR RESPONSES TO OXIDATIVE STRESS, MAY BE THE CAUSATIVE FACTOR FOR THE OXIDATIVE NEURONAL DAMAGE IN FRDA. IN ADDITION, CARDIAC AND NEURONAL INFLAMMATION MAY PLAY A ROLE IN THE PATHOLOGY OF FRDA. THUS, ACTIVATION OF NRF2 TO DRIVE ANTIOXIDANT PATHWAYS AND INHIBITION OF NF-KB TO REDUCE INFLAMMATION MAY REPRESENT A GOOD APPROACH TO THE TREATMENT OF FRDA. WE THEREFORE PROPOSE TO TEST THE FUNCTIONAL ACTIVITY OF CAT-4001, A NOVEL SMALL MOLECULE DESIGNED TO ACTIVATE NRF2 AND SIMULTANEOUSLY INHIBIT NF-KB, IN ANIMAL AND CELLULAR MODELS OF FRDA. TITLES AND SUMMARIES OF MOST OF THE PROJECTS PRESENTLY FUNDED BY FARA ARE AVAILABLE AT: WWW.CUREFA.NET/RPMP/PUBLIC/PGGRANTLIST.ASPX AND COMPLETE LISTINGS OF GRANTS AWARDED BY YEAR CAN BE ACCESSED AT: WWW.CUREFA.NET/GRANTS-AWARDED.HTML RESULTS REPORTED FROM FARA AWARDED GRANTS - IN 2015, THERE WERE >20 MEDICAL AND SCIENTIFIC PUBLICATIONS THAT WERE DETAILED REPORTS OF FARA FUNDED RESEARCH. HERE ARE THREE HIGHLIGHTED PUBLICATIONS: THE SUCCESSFUL CORRECTION OF FRDA PATIENT LYMPHOBLASTS, FIBROBLASTS, AND IPSC-DERIVED NEURONS BY EXCISION OF THE GAA REPEAT EXPANSION USING A ZINC FINGER NUCLEASE. THE CORRECTED CELLS HAD INCREASED FRATAXIN EXPRESSION, ACONITASE ACTIVITY, AND ATP LEVELS. THIS WORK IS A CRITICAL STEP TOWARDS THE DEVELOPMENT OF CELL REPLACEMENT THERAPY. (LI Y, POLAK U, BHALLA A, ROZWADOWSKA N, BUTLER J, LYNCH D, DENT S, NAPIERALA M. MOLECULAR THERAPY, PUBLISHED ONLINE 11 MARCH 2015) THE IDENTIFICATION OF A SET OF UBIQUITIN-COMPETING MOLECULES THAT INCREASE MATURE FRATAXIN LEVELS AND ACONITASE ACTIVITY IN FRDA CELLS. THESE SMALL MOLECULES PREVENT FRATAXIN PRECURSOR DEGRADATION BY THE UBIQUITIN/PROTEOSOME SYSTEM AND THE RESULTS OF THIS STUDY SUPPORT THEIR POTENTIAL ROLE AS A NOVEL THERAPEUTIC STRATEGY. (RUFINI A, CAVALLO F, CONDO I, FORTUNI S, DE MARTINO G, INCANI O, DI VENERE A, BENINI M, MASSARO DS, ARCURI G, SERIO D, MALISAN F, TESTI R. NEUROBIOLOGY OF DISEASE 75:91-99, MARCH 2015) THE VISUALIZATION OF FRATAXIN EXPRESSION IN SINGLE FRDA PATIENT CELLS SHOWING THAT THE PRESENCE OF THE GAA REPEAT EXPANSION CHANGES THE POSITION OF THE FXN GENE IN THE NUCLEUS, WHICH MAY BE LINKED TO THE DECREASE IN THE NUMBER OF FXN MRNA MOLECULES AND THEIR LOWER RATE OF SYNTHESIS. THIS STUDY ADVANCES OUR UNDERSTANDING OF THE MECHANISM BY WHICH THE GAA EXPANSION REPRESSES FRATAXIN LEVELS. (SILVA A, BROWN J, BUCKLE V, WADE MARTINS R, LUFINO M. HUMAN MOLECULAR GENETICS 24:3457-71, JUNE 2015)
FORM 990, PART VI, SECTION B, LINE 11 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 REQUIRED TO ANNUALLY COMPLETE A CONFLICT OF INTEREST STATEMENT
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 AND EXECUTIVE DIRECTOR.
FORM 990, PART VI, SECTION C, LINE 18 FORM 990 IS AVAILABLE ON THE ORGANIZATION'S WEBSITE AS WELL AS GUIDESTAR.ORG AND CHARITYNAVIGATOR.ORG
FORM 990, PART VI, SECTION C, LINE 19 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 VI LINE 17 THE ORGANIZATION IS ALSO REGISTERED TO SOLICIT CONTRIBUTIONS IN THE STATES LISTED.
FORM 990, PART XII, LINE 2C FARA'S AUDIT COMMITTEE CONSISTS OF THE FINANCE COMMITTEE, EXECUTIVE DIRECTOR 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. FARA'S BOARD OF DIRECTORS RECEIVES THE FINANCIAL STATEMENTS AND 990 FOR REVIEW AND VOTES TO APPROVE PRIOR TO PUBLIC FILING.
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.
Cat. No. 51056K
Schedule O (Form 990 or 990-EZ) 2015


Additional Data


Software ID:  
Software Version: