The Friedreich's Ataxia Research Alliance (FARA) is a national, public 501(c)(3) nonprofit organization dedicated to curing Friedreich's ataxia (FA) through research. Headquartered in Downingtown, Pennsylvania, FARA funds and facilitates research to slow, stop, reverse, and cure Friedreich's ataxia, a debilitating, life-shortening, degenerative neuromuscular disorder affecting approximately one in 50,000 people in the United States.
Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$6.9M
-10.4% YoY
Annual Giving
$7.1M
+1.6% YoY
Grant Count
32
+33.3% YoY
Avg Grant Size
$222K
-23.8% YoY
Mission & Focus Areas
FARA's mission is 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, pharmaceutical companies, and other organizations dedicated to curing FA and related diseases.
The organization's primary program areas include:
- Research Funding & Grant Making: Support for basic and translational FA research, pharmaceutical and biotech drug development, clinical trials, and scientific conferences
- Awareness, Education, and Outreach: Advocacy and public awareness campaigns for Friedreich's ataxia, including annual social media campaigns leading up to FA awareness day
- Scientific Collaboration: Serving as a catalyst between the public and scientific community to create worldwide exchanges of information that drive medical advances
- Advocacy Initiatives: Partnership efforts with other organizations to advance treatments for FA
Grantmaking
FARA operates a formal grant program supporting FA research. The organization has announced collaborative research grants, including partnerships with other organizations to fund novel approaches to addressing the root cause of Friedreich's ataxia disease.
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
States
Cities
Financial History
Multi-year comparison from IRS filings
Fiscal Year 2023:
- Total revenues: $11,203,043
- Total expenses: $12,200,773
- Total assets: $7,752,276
- Staff: 17 employees
FARA maintains audited financial statements and files IRS Form 990 annually. The organization has received a four-star rating from independent charity evaluators since 2011, reflecting strong performance in accountability, finance, impact measurement, and leadership.
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $6,946,549 | $7,752,276 | $7,260,774 |
| Revenue | $13,135,426 | $11,203,043 | $11,042,911 |
| Expenses | $13,277,236 | $12,200,773 | $11,132,747 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $172,331 | $35,631 | $78,516 |
| Distributable Amount | — | — | — |
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2024
Grant Size Distribution
128 grants across all recorded years
Giving History
Grant recipients and amounts by year
No grants recorded for .
Leadership & Key People
Leadership team and compensation from IRS filings
- Ron Bartek: Co-founder and President
- Jennifer Farmer: Executive Director
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| RONALD BARTEK | PRESIDENT/DIRECTOR | 40 | $110,000 |
| RUTH ACTON | TREASURER/DIRECTOR FINANCE | 25 | $51,000 |
| PAUL AVERY | CHAIRMAN/ DIRECTOR | 10 | — |
| MAUREEN JUIP | SECRETARY/ DIRECTOR | 10 | — |
| DR SANJAY BIDICHANDANI | DIRECTOR | 10 | — |
| BRIGID BRENNAN | DIRECTOR/ GENERAL COUNSEL | 20 | — |
| THOMAS BRENNINKMEIJER | DIRECTOR | 10 | — |
| ALEX FIELDING | DIRECTOR | 10 | — |
| JENNIFER GOOD | DIRECTOR | 10 | — |
| THOMAS HAMILTON | DIRECTOR | 10 | — |
| DR HOLLY HEDRICK | DIRECTOR | 10 | — |
| DEREK G HENNECKE | DIRECTOR | 10 | — |
| WARREN HUFF | DIRECTOR | 10 | — |
| DR STEVE KLASKO | DIRECTOR | 10 | — |
| DR KATHY MATHEWS | DIRECTOR | 10 | — |
| DR JAMES MCARTHUR | DIRECTOR | 10 | — |
| TONY PLOHOROS | DIRECTOR | 10 | — |
| PATRICK RITSCHEL | DIRECTOR | 10 | — |
| DR JAMES R RUSCHE | DIRECTOR | 10 | — |
| JENNIFER M FARMER | CHIEF EXECUTIVE OFFICER | 40 | $165,000 |
| BARBARA A TATE | CHIEF SCIENTIFIC OFFICER | 40 | $250,000 |
| ELISABETTA SORAGNI | DIRECTOR OF RESEARCH | 40 | $115,851 |
| FELICIA DEROSA | VP FUNDRAISING & COMMS | 40 | $106,351 |
Recent News & Activity
Recent developments and announcements
FARA announced a collaborative research grant with the Muscular Dystrophy Association using novel gene editing technology to address the root cause of Friedreich's ataxia disease.
Friedreich's Ataxia Research Alliance - News & Press ReleasesSubject Areas
Focus areas based on grantmaking activity
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Similar funders by location and focus area
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Data last updated April 2026. Sourced from IRS Form 990-PF filings. Research dossier generated April 2026.
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