Friedreichs Ataxia Research Alliance Fara
Public records show a registered, tax-exempt organization in good standing.
What it says it does
TO MARSHAL AND FOCUS THE RESOURCES AND RELATIONSHIPS NEEDED TO CURE FA BY RAISING FUNDS FOR RESEARCH, PROMOTING PUBLIC AWARENESS AND ALIGNING SCIENTISTS, PATIENTS, CLINICIANS, GOVERNMENT AGENCIES AND PHARMACEUTICAL COMPANIES DEDICATED TO CURING FA AND RELATED DISORDERS.
- Income
- $13.1 million
- Spending
- $13.3 million
- Spent on programs
- 94%
- Reserves
- 3.5 months of spending
- Largest source of income
- donations and private grants, 100%
- Employees
- 19
- Volunteers
- 500
- Highest pay
- $255,527, chief scientific officer
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Good: 78 out of 100. Higher than 55% of charities in its peer group (medical research, $10m to $100m).
Reserves
20 of 35Spendable reserves would cover 3.5 months of spending.
Debt
20 of 20It owes 10% of what it owns.
Living within its means
8 of 15Spending exceeded income by 1% of income.
Income trend
15 of 15Income rose 17% on the year before.
Spending floor
15 of 1594% of spending went to programs and raising each dollar of donations cost 3 cents.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Strong: 100 out of 100. Higher than 45% of charities in its peer group (medical research, $10m to $100m).
Independent board
25 of 2517 of 19 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
8 of 8Has a written whistleblower policy.
Record keeping policy
7 of 7Has a written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
15 of 15Its accounts were audited by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (4)
- $10.3 million spent. RESEARCH AND GRANT PROGRAM FARA DEPLOYS FINANCIAL RESOURCES TO ACCELERATE RESEARCH FOR FRIEDREICH'S ATAXIA (FA). IN 2024, FARA AWARDED $10+ MILLION IN RESEARCH FUNDING. THIS INCLUDED 46 GRANT PROJECTS THROUGH FARA'S INVESTIGATOR-INITIATED GRANT PROGRAM, INSTITUTIONAL BASED RESEARCH, AND FARA DIRECTED PROJECTS. IT ALSO INCLUDED FUNDING A PATIENT REGISTRY AND LONGITUDINAL NATURAL HISTORY THROUGH THE FA GLOBAL CLINICAL CONSORTIUM AND SUPPORT FOR COMMUNITY AWARENESS WHICH ARE DESCRIBED IN THE SECOND AND THIRD PROGRAM SECTIONS BELOW. FARA GRANT PROGRAM: FARA'S INVESTIGATOR-INITIATED GRANT PROGRAM AWARDED TWENTY-SIX NEW GRANTS AND APPROVED CONTINUED FUNDING FOR TWENTY GRANTS. RESEARCHERS ON FIVE CONTINENTS ARE RECEIVING RESEARCH FUNDING FROM FARA. THE PROGRAM IS A COMPETITIVE FUNDING MECHANISM THAT SUPPORTS RESEARCH TO FURTHER THE UNDERSTANDING OF FA AND PROMOTE THERAPEUTIC DISCOVERY AND DEVELOPMENT. FARA PRIORITIZES FUNDING PROJECTS THAT FILL GAPS IN KNOWLEDGE OF DISEASE MECHANISMS, SUPPORT EARLY DEVELOPMENT OF THERAPEUTIC INTERVENTIONS, ESTABLISH AND ADVANCE THE DEVELOPMENT OF TOOLS FOR DRUG DEVELOPERS AND ACADEMIC RESEARCHERS, AND FOCUS ON CLINICAL RESEARCH AND TRIALS. SEVERAL OF THESE GRANTS WERE CO-FUNDED WITH FARA'S FA ADVOCACY GROUP PARTNERS; THIS COLLABORATIVE APPROACH BOTH INCREASES THE NUMBER OF AVAILABLE RESEARCH DOLLARS AND HELPS TO MINIMIZE DUPLICATION OF EFFORT. WITH FARA'S GOAL IN MIND OF INSPIRING AND SUPPORTING JUNIOR INVESTIGATORS AND BUILDING THE NEXT GENERATIONS OF FA SCIENTISTS, IN 2024, FARA AWARDED GRANTS TO 11 JUNIOR INVESTIGATORS. FARA HAS ALSO IDENTIFIED OPPORTUNITIES TO FUND RESEARCH AT INSTITUTIONS WHERE THERE ARE MULTIPLE INVESTIGATORS WITH AN EXPERTISE AND COMMITMENT TO FA RESEARCH AND/OR OPPORTUNITY TO LEVERAGE TECHNOLOGIES, INNOVATION OR NEW GROWTH TO THE FA COMMUNITY. BY ESTABLISHING THESE INSTITUTIONAL FUNDING PROGRAMS, FARA CAN PROMOTE COLLABORATION AND SYNERGY ACROSS BASIC, TRANSLATIONAL AND CLINICAL RESEARCH, PROVIDE A LONGER-TERM COMMITMENT FOR RESEARCH, ATTRACT NEW INVESTIGATORS, AND LEVERAGE THE INSTITUTIONS RESOURCES AND ENGAGEMENT. FARA PROVIDES INSTITUTIONAL BASED RESEARCH SUPPORT FOR THE FA CENTER OF EXCELLENCE AT CHILDREN'S HOSPITAL OF PHILADELPHIA/ PENN MEDICINE (UNIVERSITY OF PENNSYLVANIA) AND THE FA ACCELERATOR PROGRAM AT THE BROAD INSTITUTE. FRIEDREICH'S ATAXIA CENTER OF EXCELLENCE, PHILADELPHIA, PA: THE FA CENTER OF EXCELLENCE (COE) IS A TRANSLATIONAL RESEARCH AND CLINICAL CARE CENTER DEVOTED TO FRIEDREICH ATAXIA: EXPEDITING BASIC SCIENCE AND DRUG DISCOVERY FINDINGS TO NEW TREATMENTS AND DEDICATING RESOURCES TO CLINICAL RESEARCH AND CARE TO FURTHER UNDERSTAND THE DISEASE, INFORM DRUG DEVELOPMENT AND IMPROVE OUTCOMES FOR INDIVIDUALS LIVING WITH FA. THE CENTER WAS ESTABLISHED IN MARCH 2014, WITH A COMMITMENT TO CHILDREN'S HOSPITAL OF PHILADELPHIA/ PENN MEDICINE (UNIVERSITY OF PENNSYLVANIA), PRESENTED BY FARA IN PARTNERSHIP WITH THE HAMILTON AND FINNERAN FAMILIES/ CUREFA FOUNDATION. PROJECTS AND INVESTIGATORS WITH CONTINUED FUNDING INCLUDED DR. ROB WILSON- DRUG DISCOVERY, DR. DAVID LYNCH- TRANSLATIONAL AND CLINICAL NEUROSCIENCE RESEARCH, DR. IAN BLAIR- BIOMARKER DISCOVERY, DR. CLEMENTINA MESAROS- BIOMARKER DISCOVERY, DR. KIM LIN- CARDIAC RESEARCH, AND DR. SHANA MCCORMACK- METABOLISM AND ENDOCRINOLOGY. THE COE ESTABLISHED RESEARCH INFRASTRUCTURE CONSISTING OF FOUR CORE AREAS- NEUROLOGY, CARDIAC, BIOMARKER, AND DRUG DISCOVERY. THE CENTER NOT ONLY SUPPORTS WORK WITHIN THESE DISCIPLINES BUT ALSO FOSTERS EFFICIENT COLLABORATION AND SYNERGY ACROSS THEM. FOR EXAMPLE, 95% OF INDIVIDUALS WITH FA HAVE THE SAME GENE MUTATION, A GAA REPEAT EXPANSION, HOWEVER, 5% OF INDIVIDUALS HAVE NON-GAA REPEAT MUTATIONS. COE CLINICIANS OBSERVED THAT INDIVIDUALS WITH CERTAIN NON-GAA MUTATIONS HAVE DIFFERENT CLINICAL SYMPTOMS AND DISEASE PROGRESSION (BOTH MORE AND LESS SEVERE). THESE CLINICAL OBSERVATIONS SPARKED LAB-BASED STUDIES INTO HOW SPECIFIC MISSENSE MUTATIONS MAY AFFECT FRATAXIN'S FUNCTION BEYOND ITS WELL-KNOWN ROLE IN IRON-SULFUR CLUSTER SYNTHESIS. THIS WORK EXPLORES WHETHER FRATAXIN MAY HAVE ADDITIONAL CELLULAR ACTIVITIES, OFFERING BOTH A NEW LENS THROUGH WHICH TO UNDERSTAND DISEASE VARIABILITY AND THE EXPLORATION OF NEW THERAPEUTIC TARGETS. FRIEDREICH'S ATAXIA ACCELERATOR AT THE BROAD INSTITUTE OF MIT AND HARVARD: THE FRIEDREICH'S ATAXIA ACCELERATOR (FAA) AT THE BROAD INSTITUTE OF MIT AND HARVARD WAS ESTABLISHED IN AUGUST 2020. THE FAA IS A COLLABORATIVE, MULTI-DISCIPLINARY EFFORT AIMED AT GALVANIZING RESEARCH INTO FA AND SEEDING A GROWING COMMUNITY ACROSS BROAD, MIT, HARVARD AND AFFILIATED INSTITUTIONS COMMITTED TO TACKLING FA. LED BY DR. VAMSI MOOTHA, THE FAA'S OVERARCHING GOAL IS TO NUCLEATE A RESEARCH COMMUNITY THAT LEVERAGES THE LATEST ADVANCES IN BIOMEDICAL RESEARCH TO DEVELOP NEW THERAPEUTIC STRATEGIES. DR. DAVID LIU HAS BEEN INVESTIGATING THERAPEUTIC APPROACHES THAT WOULD EDIT THE FRATAXIN GENE, WITH THE GOAL OF REMOVING THE GAA REPEATS (PRIME EDITING) OR INTERRUPTING THE GAA REPEATS (BASE EDITING) AND THUS REACTIVATING THE PROTEIN EXPRESSION. DR. GARY RUVKUN (A 2024 NOBEL LAUREATE) IS WORKING TO DISCOVER PROTEINS THAT INTERACT WITH FRATAXIN. DRS. JONATHAN AND CHRISTINE SEIDMAN ARE DISCOVERING CHANGES IN THE HEARTS OF PEOPLE WITH FA, INCLUDING AN INCREASE IN INFLAMMATION. THIS WORK IS FUNDED BY FARA, IN COLLABORATION WITH THE CUREFA FOUNDATION AND ENDFA. IT DEEPENS OUR KNOWLEDGE OF FA, AND THESE LEARNINGS WERE SHARED BY FOUR MEMBERS OF THE FAA WHO PRESENTED THEIR WORK AT THE INTERNATIONAL CONGRESS FOR ATAXIA RESEARCH (ICAR) IN NOVEMBER IN LONDON. FARA DIRECTED RESEARCH: IN 2024, FARA FUNDED DIRECTED RESEARCH PROGRAMS INCLUDING: 1. MAINTAINING A REPOSITORY OF FA CELL LINES FOR RESEARCH HTTPS://LABS.UTSOUTHWESTERN.EDU/NAPIERALA-LAB 2. TRACK-FA, A GLOBAL NEUROIMAGING CONSORTIUM ESTABLISHED IN 2020, A NATURAL HISTORY STUDY DESIGNED TO TRACK THE CHANGES IN THE BRAIN AND THE SPINAL CORD IN FA. STUDY PROGRESS IN 2024 AT THE PARTICIPATING CLINICAL SITES IN USA, BR
- $1.4 million spent. CLINICAL RESEARCH INFRASTRUCTUREIN ADDITION TO RESEARCH GRANTS, FARA FUNDS THE ONGOING DEVELOPMENT OF DOMAIN RESOURCES IN THE FORM OF VITAL CLINICAL RESEARCH INFRASTRUCTURE. CLINICAL RESEARCH INFRASTRUCTURE REFERS TO THE RESOURCES NEEDED TO FACILITATE ANY TYPE OF RESEARCH, INCLUDING CLINICAL TRIALS THAT INVOLVE PATIENTS. THESE RESOURCES INCLUDE PROGRAMS LIKE: FRIEDREICH'S ATAXIA GLOBAL PATIENT REGISTRY: THE FRIEDREICH'S ATAXIA GLOBAL PATIENT REGISTRY (FAGPR) IS THE ONLY WORLDWIDE REGISTRY OF FRIEDREICH'S ATAXIA PATIENTS. THE GOALS OF THE FAGPR ARE TO COLLECT INFORMATION ON ALL FA PATIENTS IN ONE REGISTRY, TO DEVELOP THE REGISTRY INTO A POWERFUL RESOURCE FOR RESEARCH, AND TO ENGAGE THE FA COMMUNITY IN STUDIES AIMED AT ADVANCING OUR KNOWLEDGE (CONTINUED IN SCHEDULE O)CLINICAL RESEARCH INFRASTRUCTURE (CONT'D):OF FA AND THE TREATMENTS BEING DEVELOPED. FARA PARTNERS WITH INTERNATIONAL PATIENT ADVOCACY ORGANIZATIONS THROUGH A GOVERNANCE BOARD TO ENSURE MULTI-STAKEHOLDER ENGAGEMENT AND OVERSIGHT OF THE FAGPR. MORE THAN 1000 INDIVIDUALS WITH FA ARE ENROLLED AND FAGPR WAS USED TO RECRUIT FOR SEVERAL CLINICAL TRIALS AND MANY CLINICAL RESEARCH STUDIES. TO LEARN MORE, VISIT CUREFA.NET/REGISTRY. FA GLOBAL CLINICAL CONSORTIUM: FARA AND THE FA COMMUNITY'S DEDICATION TO COLLECTING NATURAL HISTORY STUDY DATA OVER THE PAST TWO DECADES PROVED INSTRUMENTAL IN THE APPROVAL OF THE FIRST-EVER TREATMENT FOR FA. THROUGH THE FA GLOBAL CLINICAL CONSORTIUM (FA GCC), FARA HAS REDOUBLED ITS INVESTMENT IN NATURAL HISTORY DATA BY ENABLING THE TRANSITION TO AN INDUSTRY-LEADING DATA COLLECTION PLATFORM AND A UNIFIED GLOBAL NATURAL HISTORY PROTOCOL (UNIFAI) RESULTING FROM THE HARMONIZATION OF TWO WELL-ESTABLISHED NATURAL HISTORY STUDIES, THE FA CLINICAL OUTCOME MEASURES STUDY (FA-COMS) AND THE EUROPEAN FRIEDREICH'S ATAXIA CONSORTIUM FOR TRANSLATIONAL STUDIES (EFACTS). THE FA GCC AND THE UNIFAI STUDY HAVE BEEN EXPANDED TO MAKE PATIENT CONTRIBUTIONS TO NATURAL HISTORY EVEN MORE POWERFUL IN UNDERSTANDING FA, EVALUATING THE IMPACT OF TREATMENT OPTIONS FOR FA, ACCELERATING THE DEVELOPMENT OF NEW THERAPIES AND IMPROVING OUTCOMES FOR THOSE LIVING WITH FA. AT EACH UNIFAI STUDY VISIT THERE ARE MORE THAN 1400 DATA ELEMENTS RECORDED. OVER THE LAST TWO YEARS, THE FA GCC HAD ACTIVE PARTICIPATION FROM 54 INVESTIGATORS FROM 33 SITES REPRESENTING 18 COUNTRIES ALONG WITH REPRESENTATIVES FROM PATIENT ADVOCACY AND RESEARCH ORGANIZATIONS. FA GCC RESEARCH ACTIVITIES: THE FA GCC LEADERSHIP IDENTIFIED INITIAL SCIENTIFIC PRIORITIES AND CREATED WORKGROUPS TO ADDRESS THESE PRIORITIES. THE FOLLOWING WORK GROUPS, EACH MADE UP OF 5-10 CONSORTIUM MEMBERS, MET REGULARLY TO ADDRESS GAPS IN CURRENT FA RESEARCH: CARDIAC NATURAL HISTORY, LATE-STAGE SYMPTOMS, PEDIATRIC / PRESYMPTOMATIC, BIO-SAMPLES, MOOD AND COGNITION, AND PATIENT ADVOCACY/ADVISORY TEAM. QUARTERLY FULL GROUP MEETINGS SERVE AS A PLATFORM FOR INVESTIGATORS TO ESTABLISH COMMON RESEARCH INTERESTS, FORM COLLABORATIONS, AND SHARE THEIR GLOBAL EXPERIENCES WITH OMAVELOXOLONE. IMPACT AND FUTURE DIRECTION: THE CONSORTIUM HAS A LONG-TERM OBJECTIVE OF FOSTERING MULTILATERAL RESEARCH AND COLLABORATION ACROSS CONTINENTS, UNIFYING GLOBAL OPINIONS TO REGULATORS AND INDUSTRY PARTNERS, ACCELERATING THE DEVELOPMENT OF NEW THERAPIES, AND IMPROVING OUTCOMES FOR THOSE LIVING WITH FA. ADDITIONAL INFORMATION ABOUT FARA'S PROGRAMS IN 2024 CAN BE ACCESSED VIA THE ANNUAL REPORT AT: CUREFA.ORG
- $491,179 spent. AWARENESS, EDUCATION, AND OUTREACH PROGRAMS:AWARENESS: FRIEDREICH ATAXIA (FA) IS A RARE DISEASE; AFFECTING 1 IN 50,000 INDIVIDUALS. FARA IS DEDICATED TO ADVOCACY AND RAISING AWARENESS FOR FA. FARA HAS UTILIZED BOTH TRADITIONAL AND SOCIAL MEDIA STRATEGIES TO BRING GREATER AWARENESS TO FA IN THE GENERAL PUBLIC AND TO ENGAGE AND EDUCATE THE FA COMMUNITY. FOR EXAMPLE, FARA CONDUCTS AN ANNUAL A SOCIAL MEDIA CAMPAIGN THAT ENCOURAGES COMMUNITY PARTICIPATION LEADING UP TO FA AWARENESS DAY. ADVOCACY: FARA AND THE NATIONAL ATAXIA FOUNDATION (NAF) PARTNERED ON SEVERAL ADVOCACY INITIATIVES RELEVANT TO THE ATAXIA COMMUNITY. MOSTLY NOTABLY, THE EFFORTS OF THE TWO ORGANIZATIONS RESULTED IN THE CONTINUED INCLUSION OF HEREDITARY ATAXIA AS PART OF (CONTINUED IN SCHEDULE O)ADVOCACY: (CONT'D)THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP) AT THE DEPARTMENT OF DEFENSE IN FISCAL YEAR (FY) 24, RESULTING IN FOUR HEREDITARY ATAXIA RESEARCH GRANTS BEING RECOMMENDED FOR FUNDING TOTALING OVER $12 MILLION. FARA AND NAF WERE ALSO SUCCESSFUL IN GETTING A RESOLUTION PASSED DECLARING SEPTEMBER 25, 2024 NATIONAL ATAXIA AWARENESS DAY AND HOSTING THE SIXTH UNITED AGAINST ATAXIA HILL DAY- WITH 94 CONGRESSIONAL MEETINGS FEATURING THE PARTICIPATION OF 113 FARA AND NAF ADVOCATES FROM 32 STATES. EDUCATION: IN AN ONGOING EFFORT TO SHARE INFORMATION AND EDUCATION, FARA LAUNCHED A NEW WEBSITE IN 2024. THE SITE REDESIGN PRIORITIZED THE USER EXPERIENCE FOR KEY STAKEHOLDERS INCLUDING PATIENT FAMILIES, RESEARCHERS, AND DONORS. THE NEW SITE COINTAINS UP-TO-DATE INFORMATION ON FA RESEARCH INCLUDING GRANTS FUNDED BY FARA, TREATMENT APPROACHES AND PROGRAMS IN THE DRUG DEVELOPMENT PIPELINE, RESEARCH RESOURCES, AND CLINICAL TRIAL OPPORTUNITIES. IT ALSO OFFERS GUIDANCE FOR FAMILIES NAVIGATING FA AND OPPORTUNITIES TO CONNECT WITH OTHERS AND GET INVOLVED.ENGAGING WITH STAKEHOLDERS: AS EXPERTS IN LIVING WITH FA, INDIVIDUALS AND FAMILIES SHARED THEIR STORIES IN MANY FORUMS AND TO MANY AUDIENCES. IN 2024, OVER 50 INDIVIDUALS FROM THE FA COMMUNITY WORKED WITH FARA TO ENGAGE WITH PHARMACEUTICAL PARTNERS, RESEARCHERS, FUTURE HEALTHCARE PROFESSIONALS, MEDICAID COMMITTEES, AND THE FOOD AND DRUG ADMINISTRATION AT 33 DIFFERENT EVENTS. THEIR VOICES PROVIDE ESSENTIAL INSIGHTS THAT ADVANCE MEANINGFUL AND ACCESSIBLE TREATMENTS. CULTIVATING COMMUNITY: THROUGHOUT 2024, FARA WORKED TO STRENGTHEN THE FA COMMUNITY BY FACILITATING OPPORTUNITIES FOR CONNECTION AND COLLABORATION THROUGH VIRTUAL AND IN-PERSON EVENTS. INDIVIDUALS NEW TO THE FA COMMUNITY HAD THE OPPORTUNITY TO MEET OTHER FA FAMILIES FOR THE FIRST TIME. THE FARA AMBASSADOR PROGRAM, A GROUP OF ADULTS WITH FA WHO VOLUNTEER TO SUPPORT FARA'S MISSION, GREW TO 100 MEMBERS FROM COUNTRIES AROUND THE WORLD. AMBASSADORS NOW REPRESENT 14 COUNTRIES GLOBALLY PLUS 32 STATES THROUGHOUT THE US.TO HELP FURTHER FARA'S AWARENESS AND OUTREACH INITIATIVES, FARA ALSO FUNDED A GRANT FOR THE CREATION OF A DOCUMENTARY FILM ABOUT HOW THE FA COMMUNITY UNITES TO ADVANCE RESEARCH. THE FILM, UNDER THE WORKING TILE "THE HIGHEST ROAD," FOCUSES ON THE FA COMMUNITY'S ROLE IN HELPING TO GET THE FIRST DRUG APPROVED FOR FA A STORY THAT IS TOLD IN PARALLEL WITH COMMUNITY MEMBERS ATTEMPTING TO CYCLE UP THE HIGHEST PAVED ROAD IN INDIA. THE FILM IS CURRENTLY IS POST PRODUCTION WITH THE AIM TO BE SHOWN IN FILM FESTIVALS IN 2026.
- $357,617 spent. WORKSHOPS, SYMPOSIA, & CONFERENCESINTERNATIONAL CONGRESS FOR ATAXIA RESEARCHIN NOVEMBER 2024, THE INTERNATIONAL CONGRESS FOR ATAXIA RESEARCH (ICAR) BROUGHT TOGETHER OVER 600 RESEARCHERS FROM AROUND THE WORLD. IT WAS THE LARGEST ICAR TO DATE AND A POWERFUL EXAMPLE OF HOW WE ACCELERATE PROGRESS WHEN EXPERTS ACROSS DIFFERENT TYPES OF ATAXIA COME TOGETHER TO SHARE IDEAS AND COLLABORATE. FARA WAS HONORED TO CO-HOST THE MEETING ALONG WITH ATAXIA UK, NATIONAL ATAXIA FOUNDATION, AND THE ATAXIA GLOBAL INITIATIVE.THIS YEAR'S PROGRAM INCLUDED A MIX OF PLENARY SESSIONS, BREAKOUT WORKSHOPS, AND SCIENTIFIC DEBATE. THE DEBATE SPARKED THOUGHTFUL DISCUSSION ABOUT THE STRENGTHS OF IN VIVO VS. IN VITRO RESEARCH MODELS AND HIGHLIGHTED HOW BOTH APPROACHES HELP TO MOVE THE SCIENCE FORWARD.SOME INSIGHTS AND LEARNINGS FROM ICAR 2024 INCLUDED: 1. DISCOVERING THAT FRATAXIN ACTIVITY CAN BE BOOSTED BY TARGETING OTHER COMPONENTS OF THE IRON-SULFUR CLUSTER ASSEMBLY REVEALS A POTENTIAL NEW TREATMENT PATHWAY. 2. SOME GAA REPEAT INTERRUPTIONS ARE MORE COMMON THAN PREVIOUSLY KNOWN, IMPACTING CARRIER DETECTION AND OPENING NEW THERAPEUTIC OPPORTUNITIES. 3. INFLAMMATION MIGHT CONTRIBUTE TO NERVE DAMAGE IN FA. 4.CAPSID FOR AN IV GENE ADDITION THERAPY REACHED KEY BRAIN AND HEART AREAS IN ANIMAL MODELS 5. MULTIPLE THERAPIES ACROSS DIFFERENT MECHANISMS OF ACTION ARE SHOWING EARLY PROMISE.FARA ALSO HOSTED FIVE RESEARCH RECEPTIONS AND SYMPOSIUMS TO SHARE INFORMATION ABOUT THE FA DRUG DEVELOPMENT PIPELINE, ONGOING CLINICAL TRIALS, CLINICAL MANAGEMENT, AND FARA RESOURCES. VIRTUAL EDUCATION SESSIONS INCLUDED FLASH TALKS WITH FARA-FUNDED RESEARCHERS, COMMUNITY CONVERSATION WEBINARS WITH FARA LEADERSHIP, AND INFORMATION SESSIONS WITH PHARMACEUTICAL PARTNERS.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending December 2024.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since May 1999.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.
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