Attach to Form 990 or Form 990-EZ.
Go to
www.irs.gov/Form990 for instructions and the latest information.
| (i) Name of supported organization | (ii) EIN | (iii) Type of organization (described on lines 1- 10 above (see instructions)) | (iv) Is the organization listed in your governing document? | (v) Amount of monetary support (see instructions) | (vi) Amount of other support (see instructions) | |
|---|---|---|---|---|---|---|
| Yes | No | |||||
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Total |
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Calendar year
(or fiscal year beginning in)
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(a) 2018 | (b) 2019 | (c) 2020 | (d) 2021 | (e) 2022 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. | 7,662,625 | 7,146,206 | 12,628,384 | 7,808,772 | 11,604,349 | 46,850,336 |
| 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 | 7,662,625 | 7,146,206 | 12,628,384 | 7,808,772 | 11,604,349 | 46,850,336 |
| 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) .. | 9,138,897 | |||||
| 6 | Public support. Subtract line 5 from line 4. | 37,711,439 | |||||
Calendar year
(or fiscal year beginning in)
![]() |
(a) 2018 | (b) 2019 | (c) 2020 | (d) 2021 | (e) 2022 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | 7,662,625 | 7,146,206 | 12,628,384 | 7,808,772 | 11,604,349 | 46,850,336 |
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | 42,296 | 45,345 | 38,997 | 47,170 | 65,540 | 239,348 |
| 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 | 47,089,684 | |||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2018 | (b) 2019 | (c) 2020 | (d) 2021 | (e) 2022 | (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.) | ||||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2018 | (b) 2019 | (c) 2020 | (d) 2021 | (e) 2022 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 9 | Amounts from line 6... | ||||||
| 10a | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources.. | ||||||
| b | Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975. | ||||||
| c | Add lines 10a and 10b. | ||||||
| 11 | Net income from unrelated business activities not included on line 10b, whether or not the business is regularly carried on. | ||||||
| 12 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) .. | ||||||
| 13 | Total support. (Add lines 9, 10c, 11, and 12.).. | ||||||
| Section A - Adjusted Net Income | (A) Prior Year |
(B) Current Year (optional) |
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| 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) |
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| 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): |
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| 2 | Acquisition indebtedness applicable to non-exempt use assets | 2 | ||||
| 3 | Subtract line 2 from line 1d | 3 | ||||
| 4 | Cash deemed held for exempt use. Enter 0.015 of line 3 (for greater amount, see instructions). | 4 | ||||
| 5 | Net value of non-exempt-use assets (subtract line 4 from line 3) | 5 | ||||
| 6 | Multiply line 5 by 0.035 | 6 | ||||
| 7 | Recoveries of prior-year distributions | 7 | ||||
| 8 | Minimum Asset Amount (add line 7 to line 6) | 8 | ||||
| Section C - Distributable Amount | Current Year | |||||
| 1 | Adjusted net income for prior year (from Section A, line 8, Column A) | 1 | ||||
| 2 | Enter 85% of line 1 | 2 | ||||
| 3 | Minimum asset amount for prior year (from Section B, line 8, Column A) | 3 | ||||
| 4 | Enter greater of line 2 or line 3 | 4 | ||||
| 5 | Income tax imposed in prior year | 5 | ||||
| 6 | Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions) | 6 | ||||
| Section D - Distributions | Current Year | |
|---|---|---|
| 1 Amounts paid to supported organizations to accomplish exempt purposes | 1 | |
|
2
Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in excess of income from activity |
2 | |
| 3 Administrative expenses paid to accomplish exempt purposes of supported organizations | 3 | |
| 4 Amounts paid to acquire exempt-use assets | 4 | |
| 5 Qualified set-aside amounts (prior IRS approval required - provide details in Part VI) | 5 | |
| 6 Other distributions (describe in Part VI). See instructions | 6 | |
| 7Total annual distributions. Add lines 1 through 6. | 7 | |
|
8
Distributions to attentive supported organizations to which the organization is responsive (provide details in Part VI). See instructions |
8 | |
| 9 Distributable amount for 2022 from Section C, line 6 | 9 | |
| 10 Line 8 amount divided by Line 9 amount | 10 | |
| Section E - Distribution Allocations (see instructions) |
(i) Excess Distributions |
(ii) Underdistributions Pre-2022 |
(iii) Distributable Amount for 2022 |
|
|---|---|---|---|---|
| 1 Distributable amount for 2022 from Section C, line 6 | ||||
|
2
Underdistributions, if any, for years prior to 2022 (reasonable cause required-- explain in Part VI).
See instructions. |
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| 3 Excess distributions carryover, if any, to 2022: | ||||
| a From 2017....... | ||||
| b From 2018....... | ||||
| c From 2019....... | ||||
| d From 2020....... | ||||
| e From 2021....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2022 distributable amount | ||||
|
i
Carryover from 2017 not applied (see instructions) |
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| j Remainder. Subtract lines 3g, 3h, and 3i from line 3f. | ||||
| 4Distributions for 2022 from Section D, line 7: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2022 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from line 4. | ||||
|
5
Remaining underdistributions for years prior to 2022, if any. Subtract lines 3g and 4a from line 2. If the amount is greater than zero, explain in Part VI. See instructions. |
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|
6
Remaining underdistributions for 2022. Subtract lines 3h and 4b from line 1. If the amount is greater than zero, explain in Part VI. See instructions. |
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7 Excess distributions carryover to 2023. Add lines 3j and 4c. |
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| 8 Breakdown of line 7: | ||||
| a Excess from 2018..... | ||||
| b Excess from 2019..... | ||||
| c Excess from 2020..... | ||||
| d Excess from 2021..... | ||||
| e Excess from 2022..... | ||||
| Facts And Circumstances Test |
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| Return Reference | Explanation |
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| Software ID: | |
| Software Version: |
Attach to Form 990 or 990-EZ.
Go to www.irs.gov/Form990 for the latest information.
| Return Reference | Explanation |
|---|---|
| FORM 990, PART III, LINE 4A | RESEARCH AND GRANT PROGRAM FARA DEPLOYS FINANCIAL RESOURCES TO ACCELERATE RESEARCH FOR FRIEDREICH'S ATAXIA (FA). IN 2022, FARA AWARDED NEARLY $8.5 MILLION IN RESEARCH FUNDING. THIS INCLUDED 50 ACTIVE RESEARCH PROJECTS THROUGH FARA'S INVESTIGATOR-INITIATED GRANT PROGRAM, INSTITUTIONAL BASED RESEARCH AND FARA DIRECTED PROJECTS. FARA GRANT PROGRAM FARA'S INVESTIGATOR-INITIATED GRANT PROGRAM AWARDED TWENTY-TWO NEW GRANTS AND APPROVED CONTINUED FUNDING FOR SIXTEEN GRANTS. NINE OF THESE NEW GRANTS WERE AWARDED TO INVESTIGATORS NEW TO FA RESEARCH, INCLUDING FOUR JUNIOR INVESTIGATORS. RESEARCHERS IN SEVEN COUNTRIES ARE RECEIVING RESEARCH FUNDING FROM FARA. FARA'S GRANT PROGRAM IS FUNDING RESEARCH THAT FURTHERS THE UNDERSTANDING OF FA AT A VERY BASIC OR MECHANISTIC LEVEL, PROMOTES DRUG DISCOVERY, ADVANCES GENE AND CELL THERAPY APPROACHES, SEEKS TO IDENTIFY NEW BIOMARKERS AND CLINICAL OUTCOME ASSESSMENTS THAT CAN INFORM AND SUPPORT FUTURE CLINICAL TRIALS AND INVESTIGATES APPROACHES TO IMPROVE CLINICAL OUTCOMES FOR THOSE LIVING WITH FA. SEVERAL OF THESE GRANTS WERE CO-FUNDED WITH FARA'S FA ADVOCACY GROUP PARTNERS; THIS COLLABORATIVE APPROACH BOTH INCREASES THE NUMBER OF AVAILABLE RESEARCH DOLLARS AND HELPS TO MINIMIZE DUPLICATION OF EFFORT. FARA HAS IDENTIFIED OPPORTUNITIES TO FUND RESEARCH AT INSTITUTIONS WHERE THERE ARE MULTIPLE INVESTIGATORS WITH AN EXPERTISE AND COMMITMENT TO FA RESEARCH AND/OR OPPORTUNITY TO LEVERAGE TECHNOLOGIES, INNOVATION OR NEW GROWTH TO THE FA COMMUNITY. BY ESTABLISHING THESE INSTITUTIONAL FUNDING PROGRAMS, FARA IS ABLE TO PROMOTE COLLABORATION AND SYNERGY ACROSS BASIC, TRANSLATIONAL AND CLINICAL RESEARCH, PROVIDE A LONGER-TERM COMMITMENT FOR RESEARCH, ATTRACT NEW INVESTIGATORS, AND LEVERAGE THE INSTITUTIONS RESOURCES AND ENGAGEMENT. FARA PROVIDES INSTITUTIONAL BASED RESEARCH SUPPORT FOR THE FA CENTER OF EXCELLENCE AT PENN MEDICINE/ CHILDREN'S HOSPITAL OF PHILADELPHIA AND THE FA ACCELERATOR PROGRAM THE BROAD INSTITUTE. FRIEDREICH'S ATAXIA CENTER OF EXCELLENCE, PHILADELPHIA, PA THE FA CENTER OF EXCELLENCE (COE) IS A TRANSLATIONAL RESEARCH AND CLINICAL CARE CENTER DEVOTED TO FRIEDREICH ATAXIA: EXPEDITING BASIC SCIENCE AND DRUG DISCOVERY FINDINGS TO NEW TREATMENTS AND DEDICATING RESOURCES TO CLINICAL RESEARCH AND CARE TO FURTHER UNDERSTAND THE DISEASE, INFORM DRUG DEVELOPMENT AND IMPROVE OUTCOMES FOR INDIVIDUALS LIVING WITH FA. THE CENTER WAS ESTABLISHED IN MARCH 2014, WITH A COMMITMENT TO PENN MEDICINE/ CHILDREN'S HOSPITAL OF PHILADELPHIA, PRESENTED BY FARA IN PARTNERSHIP WITH THE HAMILTON AND FINNERAN FAMILIES/ CUREFA FOUNDATION. PROJECTS AND INVESTIGATORS WITH CONTINUED FUNDING INCLUDED DR. ROB WILSON- DRUG DISCOVERY, DR. DAVID LYNCH- TRANSLATIONAL AND CLINICAL NEUROSCIENCE RESEARCH, DR. IAN BLAIR- BIOMARKER DISCOVERY, DR. KIM LIN- CARDIAC RESEARCH, DR. SHANA MCCORMACK- METABOLISM AND ENDOCRINOLOGY, AND DR. JENNIFER PHILLIPS CREMINS- GENETIC MODELING. THE CENTER NOT ONLY SUPPORTS WORK WITHIN THESE DISCIPLINES, BUT ALSO FOSTERS EFFICIENT COLLABORATION AND SYNERGY ACROSS THEM. FOR EXAMPLE, DR. LYNCH, WHO ACTIVELY PARTICIPATES IN BOTH BASIC AND CLINICAL RESEARCH, IS INVESTIGATING WHETHER THE METABOLIC ALTERATIONS HE HAS OBSERVED IN PATIENTS COULD BE DUE TO DYSFUNCTIONS OF SPECIFIC ENZYMES WHEN FRATAXIN LEVELS ARE LOW. HIS FINDINGS HAVE THE POTENTIAL TO IDENTIFY NEW THERAPEUTIC TARGETS. ANOTHER EXAMPLE IS THE EXRX-FA TRIAL, AN NIH SUPPORTED CLINICAL TRIAL THAT INSPIRED THE PRECLINICAL STUDIES ON MUSCLE AND HEART OF THE COE COLLABORATORS, ERIN SEIFERT, PHD AND JOSEPH BAUR, PHD. IN ADDITION, WITH SUPPORT FROM FARA, THE EXRX-FA CLINICAL TRIAL HAS BEEN EXPANDED TO INCLUDE COLLECTION OF BIOMARKER DATA, MEASURES THAT COULD BE USEFUL IN FUTURE THERAPEUTIC TRIALS. A MAJOR ACCOMPLISHMENT IN 2022, LED BY DAVID LYNCH, MD, PHD, WAS THE COMPLETION AND PUBLICATION OF STUDIES OF OMAVELOXOLONE, A NEW TREATMENT THAT HAS COMPLETED CLINICAL TRIALS IN FA. THESE STUDIES PROVIDED THE EVIDENCE NEEDED TO RECEIVE AN EXPEDITED REVIEW OF THIS FIRST NEW DRUG APPLICATION AT THE FDA. THE INVESTIGATORS AT THE COE AT CHOP CONTRIBUTE TO FINDING TREATMENTS FOR FA BY REGULARLY PUBLISHING THEIR WORK, TRAINING NEW INVESTIGATORS TO COMMIT TO RESEARCH ON FA, PARLAYING FARA FUNDING INTO LARGER GRANTS FROM NIH AND BY BEING THE LARGEST SITE FOR THE FA NATURAL HISTORY STUDY. FRIEDREICH'S ATAXIA ACCELERATOR AT THE BROAD INSTITUTE OF MIT AND HARVARD THE FRIEDREICH'S ATAXIA ACCELERATOR (FAA) AT THE BROAD INSTITUTE OF MIT AND HARVARD WAS ESTABLISHED IN AUGUST 2020. FUNDED BY FARA, IN COLLABORATION WITH THE CUREFA FOUNDATION AND ENDFA, THE FAA IS A COLLABORATIVE, MULTI-DISCIPLINARY EFFORT AIMED AT GALVANIZING RESEARCH INTO FA AND SEEDING A GROWING COMMUNITY ACROSS BROAD, MIT, HARVARD AND AFFILIATED INSTITUTIONS COMMITTED TO TACKLING FA. LED BY VAMSI MOOTHA, MD, THE FAA INVESTIGATORS INCLUDE GARY RUVJUM, PHD, DAVID LIU, PHD, CHRISTINE SEIDMAN, MD,JONATHAN SEIDMAN, PHD, ANOOPUM GUPTA, MD AND ANTHONY PHILIPPAKIS, MD. THE FIRST THREE YEARS OF FAA SUPPORTED RESEARCH INITIATIVES TO UNDERSTAND THE DEEP BIOCHEMICAL BASIS OF FA AS WELL AS TO EVALUATE THE THERAPEUTIC POTENTIAL OF NEW EARLY-STAGE INNOVATIVE APPROACHES IN ANIMAL MODELS. PROJECTS INCLUDE EVALUATING HYPOXIA AS A THERAPY, DIRECT EDITING OF DNA TO REPAIR THE FA REPEAT LESION, IDENTIFYING GENETIC/CHEMICAL MODIFIERS THAT CAN BYPASS THE NEED FOR FRATAXIN, AND UNDERSTANDING THE CAUSE OF FA CARDIOMYOPATHY. OVER THE FIRST 2.5 YEARS OF FAA, INVESTMENT IN UNDERSTANDING FA BASIC AND TRANSLATIONAL BIOLOGY HAS ALREADY YIELDED NEW DISCOVERIES (WITH FOUR NEW RESEARCH PAPERS SUBMITTED) AND SUGGEST COMPLETELY NEW THERAPEUTIC AVENUES (WITH THREE NEW PATENTS SUBMITTED). IN 2022, TWO NEW PROJECTS WERE LAUNCHED. ONE TO ACCELERATE ADVANCEMENT OF EFFECTIVE TREATMENTS BY DEVELOPING AT HOME ASSESSMENTS OF MOVEMENT AND SPEECH. THE OTHER TO LEVERAGE EXISTING LARGE BIOBANKS OF GENETIC SEQUENCE DATA TO FURTHER UNDERSTAND THE PREVALENCE OF FA, AS WELL AS POTENTIALLY UNCOVER NOVEL GENETIC MODIFIERS OF THE CONDITION. FAA HAS HAD AN IMPACT IN COMMUNITY BUILDING. DURING THE PAST 2.5 YEARS, FAA HAS ENABLED OVER 20 RESEARCHERS ACROSS FIVE LABORATORIES TO APPLY THEIR EXISTING EXPERTISE TOWARD FA RESEARCH. TWO FAA POST-DOCTORAL FELLOWS HAVE JUST LAUNCHED THEIR OWN INDEPENDENT LABORATORIES THAT WILL CONTINUE FA-RELATED RESEARCH: TSLIL AST AT THE WEIZMANN INSTITUTE AND MANDA ARBAB AT THE BOSTON CHILDREN'S HOSPITAL TRANSLATIONAL NEUROSCIENCE CENTER AND HARVARD MEDICAL SCHOOL. TSLIL AST'S FA RESEARCH RECEIVED THE PRESTIGIOUS ERIC S. LANDER AWARD RECOGNIZING OUTSTANDING ACCOMPLISHMENT IN SCIENCE. FARA DIRECTED RESEARCH IN 2022, FARA FUNDED DIRECTED RESEARCH PROGRAMS INCLUDING: 1. MAINTAINING A REPOSITORY OF FA CELL LINES FOR RESEARCH HTTPS://LABS.UTSOUTHWESTERN.EDU/NAPIERALA-LAB 2. TRACK-FA, A GLOBAL NEUROIMAGING CONSORTIUM ESTABLISHED IN 2020, DESIGNED A NATURAL HISTORY STUDY TO TRACK THE CHANGES IN THE BRAIN AND THE SPINAL CORD IN FA. PARTICIPATING CLINICAL SITES IN USA, BRAZIL, GERMANY, AND AUSTRALIA CONTINUED ENROLLMENT IN 2022. THE GOAL IS TO ENROLL 200 INDIVIDUALS WITH FA AND 100 MATCHED CONTROLS AND CONDUCT NEUROIMAGING OF THE BRAIN AND SPINAL, ALONG WITH CLINICAL OUTCOMES AND BLOOD BIOMARKERS. AT THE CLOSE OF 2022, 122 INDIVIDUALS WITH FA AND 43 CONTROLS HAD BEEN ENROLLED. THE CONSORTIUM PUBLISHED ITS FIRST SCIENTIFIC ARTICLE THAT PRESENTS THE BACKGROUND ON THE TRACK-FA STUDY AND THE SCIENTIFIC PROCEDURES. THE PUBLICATION IS OPEN ACCESS AT: HTTPS://JOURNALS.PLOS.ORG/PLOSONE/ARTICLE?ID=10.1371/JOURNAL.PONE.026964 9 3. FOSTERING A COLLABORATIVE EFFORT BETWEEN RESEARCHERS AT UNIVERSITY OF OKLAHOMA, UNIVERSITY OF TEXAS SOUTHWESTERN, AND UNIVERSITY OF PENNSYLVANIA TO STUDY THE PRECISE MECHANISM OF THIS GENE SILENCING IN DIFFERENT TISSUES AND MODELS OVER TIME. 4. ASSEMBLING GLOBAL CLINICAL EXPERTS TO LEAD A RE-EVALUATION AND UPDATE TO THE CLINICAL MANAGEMENT GUIDELINES (CMG) IN FA. AN UPDATE TO THE CMG FOR FA WAS PUBLISHED IN 2022 FOR REFERENCE USE BY PHYSICIANS, AND PATIENTS. THIS PROJECT, LED BY DR. LOUISE CORBEN, IS THE RESULT OF THE EFFORTS OF A 12-PERSON STEERING COMMITTEE, 70 EXPERT AUTHORS, AND AN 11-PERSON PATIENT AND CAREGIVER PANEL. THE CMGS CAN BE ACCESSED AT HTTPS://FRDAGUIDELINES.ORG AND INCLUDES TOPIC CHAPTERS, LAY SUMMARIES, RECOMMENDATIONS, BEST PRACTICE STATEMENTS, AND LINKS TO THE EVIDENCE TO RECOMMENDATION TABLES. ALSO, THERE ARE THREE NEW TOPICS: EMERGENCY MEDICINE, DIGITAL AND ASSISTIVE TECHNOLOGIES, AND MENTAL HEALTH. 5. DEVELOPMENT AND VALIDATION OF A POTENCY ASSAY FOR USE IN THE DEVELOPMENT OF GENE AND PROTEIN REPLACEMENT THERAPIES. 6. LEADING WORK TO CREATE A NEW DISEASE MODEL FOR PRE-CLINICAL RESEARCH, AN FA RAT MODEL. 7. IDENTIFYING AND FUNDING RESEARCH TO UNDERSTAND THE THERAPEUTIC WINDOW (MINIMAL AMOUNT OF FRATAXIN NEEDED FOR A THERAPEUTIC BENEFIT AND THRESHOLD FOR MAXIMUM AMOUNTS OR TOXIC AMOUNTS OF FRATAXIN IN THE CELL. |
| FORM 990, PART III, LINE 4A | OF NOTE, FA SHARES SIMILAR SYMPTOMS AND DISEASE MECHANISMS WITH OTHER DISEASES, BOTH RARE AND COMMON. RESEARCH INTO FA CAN PROVIDE INSIGHTS AND ADVANCES IN OTHER DISEASES SUCH AS MITOCHONDRIAL DISEASES, MUSCULAR DYSTROPHIES, DIABETES, AND CARDIOMYOPATHY. A COMPLETE LIST OF 2022 FUNDED GRANTS CAN BE FOUND AT: CUREFA.ORG/GRANT/GRANT-AWARDS A COMPLETE LIST OF 2022 PUBLICATIONS OF RESEARCH FUNDED BY FARA CAN BE FOUND AT: CUREFA.ORG/RESEARCH/FARA-FUNDED-RESEARCH |
| FORM 990, PART VI, SECTION B, LINE 11B | COPIES OF 990 ARE DISTRIBUTED TO BOARD MEMBERS FOR REVIEW AND APPROVAL PRIOR TO FILING. |
| FORM 990, PART VI, SECTION B, LINE 12C | ALL NEW AND EXISTING BOARD MEMBERS ARE REQUIRED TO ANNUALLY REVIEW AND SIGN A CONFLICT OF INTEREST POLICY AND REPORT DISCLOSURES. |
| FORM 990, PART VI, SECTION B, LINE 15 | EVALUATION AND COMPENSATION COMMITTEE PERFORMS EMPLOYEE EVALUATIONS AND DETERMINES SALARY INCREASES ON A YEARLY BASIS FOR ALL EMPLOYEES. COMMITTEE EXAMINES BENCHMARK DATA IN DETERMINING SALARIES FOR PRESIDENT, CEO, CSO AND DIRECTOR FINANCE ADMINISTRATION. |
| FORM 990, PART VI, SECTION C, LINE 19 | FORM 990 IS AVAILABLE ON THE ORGANIZATION'S WEBSITE AS WELL AS GUIDESTAR.ORG AND CHARITYNAVIGATOR.ORG FINANCIAL STATEMENTS ARE AVAILABLE ON THE ORGANIZATION'S WEBSITE. THE GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FORM 1023 ARE AVAILABLE UPON REQUEST. |
| FORM 990, PART XI, LINE 9: | PRIOR YEAR GRANT REFUNDS INCLUDED IN SUPPORT ON FINANCIAL STATEMENTS 74,430. |
| FORM 990, PART XII, LINE 2C | FARA'S AUDIT COMMITTEE CONSISTS OF THE FINANCE COMMITTEE, CEO AND ONE AT-LARGE BOARD MEMBER. EACH YEAR THE AUDIT COMMITTEE SEEKS THE SERVICES OF AN OUTSIDE ACCOUNTING FIRM AND CONTRACTS FOR A FULL AUDIT, PREPARATION OF FINANCIAL STATEMENTS AND FILING OF THE 990. THE AUDIT COMMITTEE IS RESPONSIBLE FOR REVIEWING RECOMMENDATIONS FROM THE AUDIT AND PROPOSING NEW POLICIES AND PROCEDURES AS NECESSARY. THE AUDIT COMMITTEE ALSO PARTICIPATES IN DETAILED REVIEW OF FINANCIAL STATEMENTS PRIOR TO SHARING WITH THE FULL BOARD FOR A VOTE. ALL 990 INFORMATION IS VERIFIED FOR ACCURACY AND COMPLETENESS BY FARA'S DIRECTOR OF FINANCE, FARA'S VP OF FUNDRAISING AND COMMUNICATIONS AND FARA'S CEO. THE VERIFIED DRAFT IS REVIEWED BY THE FARA FINANCE COMMITTEE AND SUBMITTED TO THE FULL FARA BOARD FOR REVIEW AND APPROVAL PRIOR TO FILING. |
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