Friedreich's Ataxia Research Alliance
The Friedreich’s Ataxia Research Alliance (FARA) is a public charity based in Springfield, Virginia, dedicated to scientific research leading to treatments and a cure for Friedreich’s ataxia (FA). It supports research through competitive grants, institutional programs, and directed projects, and also invests in clinical research infrastructure, including a patient registry and natural-history research.
Key facts about Friedreich's Ataxia Research Alliance
In short: Friedreich's Ataxia Research Alliance gave $7.1M across 32 grants in 2024 (avg $222K), top state Massachusetts. 38% of 2024 grantees were new. Source: 2024 IRS Form 990.
- EIN
- 52-2122720
- Latest 990 filing
- Form 990, 2024
- Annual giving (2024)
- $7,105,812
- Grants made (2024)
- 32
- Average grant
- $222,057
- Median grant
- $120,868
- New grantees (estimate)
- 38% first-time grantees (12 of 32, 2024)
- Total assets
- $6,946,549
- Primary geography
- Massachusetts (44% of itemized 2024 grant dollars)
- How to apply
- Submit a letter of intent through FARA’s grant portal for opportunities that require one. Full details ↓
- Deadline
- General Research Grant LOI deadlines are February 15 and August 15, with application deadlines of April 15 and October…
Data from IRS Form 990, 2024; updated September 2026. New grantees are estimated by matching recipient names across years (methodology). Application details from Grantable's research on the foundation's public materials; confirm on its website before applying.
Financial Overview
From 2024 IRS Form 990 · 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
Is Friedreich's Ataxia Research Alliance open to new grantees?
38%
first-time grantees, 2024
In 2024, 12 of 32 grantees (38%) were first-time recipients. First grants averaged $142K; repeat grants $270K. How we count
Medians: $100K first-time, $190K repeat.
Estimate from itemized grant lists in IRS Form 990 filings (2019–2024). Recipient names are matched across years, so a renamed or misspelled grantee can look new; grants to individuals are left out. Methodology.
Mission & Focus Areas
FARA’s mission is to marshal and focus resources and relationships to cure FA by raising funds for research, promoting public awareness, and aligning scientists, patients, clinicians, government agencies, pharmaceutical companies, and other organizations working to cure FA and related disorders.
The grant program supports basic, translational, and clinical research aimed at advancing therapeutic development. Priorities include understanding FA neuroscience and disease mechanisms, investigating cardiac disease, and advancing drug discovery—including gene and protein replacement, gene editing, and approaches to increase frataxin. FARA also supports research tools and resources, clinical research, collaboration, and public-private partnerships.
FARA accepts applications from academic and nonprofit institutions, hospitals, laboratories, government agencies, and biotechnology and pharmaceutical companies, including for-profit entities, worldwide where permitted by law. Its 2024 grantees included research organizations and universities. For example, the Broad Institute describes its mission as advancing biomedicine through research into disease and its treatment; the University of Rochester describes its work as including higher education, research, and charitable patient care; and St. Jude Children’s Research Hospital describes its mission as advancing cures and prevention for pediatric catastrophic diseases through research and treatment.
Grantmaking
In 2024, FARA reported awarding more than $10 million across 46 research projects through its investigator-initiated grants, institutional research support, and directed projects, as well as support for a patient registry, longitudinal natural-history research, and community awareness. Its investigator-initiated program awarded 26 new grants and approved continued funding for 20 grants.
Review Cycle
General Research Grant LOI deadlines are February 15 and August 15, with application deadlines of April 15 and October 15. The Award for Innovative Mindset has an April 1 application deadline and does not require an LOI. Other award deadlines vary by grant type.
Ready to take the next step with Friedreich's Ataxia Research Alliance?
Geographic Focus
Where this funder awards grants
FARA welcomes applications from researchers in all countries, as permitted by law. In 2024, grant dollars were distributed primarily to recipients in Massachusetts (44%), Pennsylvania (17%), California (12%), New York (8%), and Florida (6%).
Grant Distribution by State
Share of 2024 grant dollars across all 32 itemized grants.
States
Cities
Giving Over Time
Total grant dollars and number of grants per year
From 2019 to 2024, annual grant giving ranged from $4.4M (2019) to $7.5M (2022). In 2024 it made 32 grants totaling $7.1M.
Grant Insights
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2024
The largest 2024 recipient was The Broad Institute ($1.9M). Together the top 10 received $5.2M.
Grant Size Distribution
128 grants across all recorded years
The most common grant size was in the $100–250K range: 47 grants of 128 (37%).
Giving History
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| The Broad Institute Cambridge, MA | Medical Research | $1,945,086 |
| Children's Hospital of Philadelphia Research Institute Philadelphia, PA | Medical Research | $713,919 |
| Children's Hospital of Philadelphia Foundation Philadelphia, PA | Medical Research | $500,000 |
| University of Florida Gainesville, FL | Medical Research | $359,182 |
| Regents of the University of Minnesota Minneapolis, MN | Medical Research | $339,615 |
| Massachusetts General Hospital Boston, MA | Medical Research | $313,988 |
| University of Massachusetts Boston, MA | Medical Research | $300,000 |
| Weill Medical College of Cornell University New York, NY | Medical Research | $274,855 |
| Stanford University Stanford, CA | Medical Research | $250,000 |
| Vesigen Inc Cambridge, MA | Medical Research | $204,136 |
Financial History
Multi-year comparison from IRS filings
| Filing year | Assets | Revenue | Expenses | Grants listed |
|---|---|---|---|---|
| 2024 | $6,946,549 | $13,135,426 | $13,277,236 | $7,105,812 (32 grants) |
| 2023 | $7,752,276 | $11,203,043 | $12,200,773 | $6,991,973 (24 grants) |
| 2022 | $7,260,774 | $11,042,911 | $11,132,747 | $7,458,986 (27 grants) |
| 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 |
| Net Investment Income | $172,331 | $35,631 | $78,516 |
Data update history
When this profile's IRS filing data changed on Grantable
- Added Form 990 for fiscal year 2019 (received by the IRS May 19, 2020)
- Updated Form 990 for fiscal year 2020 (received by the IRS May 13, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS August 5, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS July 14, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS August 13, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS October 16, 2025)
- IRS filings on file for fiscal years 2020–2024
Leadership & Key People
Leadership team and compensation from IRS filings
The 2024 filing lists Ronald Bartek as president and director; Ruth Acton as treasurer and director of finance; Paul Avery as chairman and director; and Maureen Juip as secretary and director. It also lists Sanjay Bidichandani, Brigid Brennan, Thomas Brenninkmeijer, Alex Fielding, Jennifer Good, and Thomas Hamilton as directors.
Friedreich's Ataxia Research Alliance is led by Jennifer M. Farmer, Chief Executive Officer on every filing since 2019; 6 of 23 officers listed in 2024 are compensated.
Officers on the 2024 filing
Jennifer M. Farmer
Chief Executive Officer
On filings since 2019
40 hrs/week
$130K (2019) → $165K (2024)
Ronald Bartek
President & Director
On filings since 2019
40 hrs/week
$100K (2019) → $110K (2024)
Paul Avery
Chairman & Director
On filings since 2019
10 hrs/week
No compensation reported
Ruth Acton
Treasurer & Director Finance
Treasurer & Director of Finance Administrator → Treasurer & Director Finance Administrator, 2023
Treasurer & Director Finance Administrator → Treasurer & Director Finance, 2024
On filings since 2019
25 hrs/week
$40K (2019) → $51K (2024)
Elisabetta Soragni
Director of Research
On filings since 2021
40 hrs/week
$103K (2021) → $116K (2024)
Brigid Brennan
Director & General Counsel
Director → Director & In-House Counsel, 2020
Director & In-House Counsel → Director & General Counsel, 2021
On filings since 2019
20 hrs/week
No compensation reported
Derek G. Hennecke
Director
On filings since 2019
10 hrs/week
No compensation reported
Holly Hedrick
Director
On filings since 2019
10 hrs/week
No compensation reported
James McArthur
Director
Scientific Director → Director, 2021
On filings since 2019
10 hrs/week
No compensation reported
James R. Rusche
Director
Scientific Director → Director, 2021
On filings since 2019
10 hrs/week
No compensation reported
Jennifer Good
Director
On filings since 2019
10 hrs/week
No compensation reported
Patrick Ritschel
Director
On filings since 2019
10 hrs/week
No compensation reported
Sanjay Bidichandani
Director
Scientific Director → Director, 2021
On filings since 2019
10 hrs/week
No compensation reported
Steve Klasko
Director
On filings since 2019
10 hrs/week
No compensation reported
Thomas Hamilton
Director
On filings since 2019
10 hrs/week
No compensation reported
Tony Plohoros
Director
On filings since 2019
10 hrs/week
No compensation reported
Kathy Mathews
Director
On filings since 2020
10 hrs/week
No compensation reported
Alex Fielding
Director
On filings since 2021
10 hrs/week
No compensation reported
Thomas Brenninkmeijer
Director
On filings since 2021
10 hrs/week
No compensation reported
Maureen Juip
Secretary & Director
New on the 2024 filing
10 hrs/week
No compensation reported
Warren Huff
Director
New on the 2024 filing
10 hrs/week
No compensation reported
Barbara A. Tate
Chief Scientific Officer
On filings since 2021
40 hrs/week
$250K (2021) → $250K (2024)
Felicia Derosa
Vice President Fundraising & Comms
On filings since 2023
40 hrs/week
$102K (2023) → $106K (2024)
Former officers (3)
- Former: Marilyn E. Downing (2019–2023) — Secretary & Director
- Former: Edward Ramsey (2019–2020) — Director
- Former: Geoffrey Levitt (2019) — Director
Data from IRS Form 990 filings, 2019–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2024 IRS filing
The highest reported compensation on the 2024 filing was $250K, to Barbara a Tate (Chief Scientific Officer). 6 officers or directors reported compensation on that filing.
Contact
Mailing address: PO Box 1537, Springfield, VA 22151
Phone: (484) 879-6160
Website: https://curefa.org
Frequently asked questions about Friedreich's Ataxia Research Alliance
How much does Friedreich's Ataxia Research Alliance give each year?
Friedreich's Ataxia Research Alliance gave $7.1M across 32 grants in 2024, according to its 2024 IRS Form 990. In 2023 it gave $7.0M across 24 grants.
What is Friedreich's Ataxia Research Alliance's typical grant size?
Friedreich's Ataxia Research Alliance's median grant in 2024 was $120,868, and its average grant was $222,057, across 32 grants on its 2024 IRS Form 990. Organizations receiving their first grant from Friedreich's Ataxia Research Alliance that year got $142K on average.
Where does Friedreich's Ataxia Research Alliance give grants?
Friedreich's Ataxia Research Alliance's top state is Massachusetts, with 44% of the grant dollars itemized on its 2024 IRS Form 990. The next largest states were Pennsylvania (17%) and California (12%). The most frequent recipient cities were Cambridge, MA (2 grants), Philadelphia, PA (2 grants), Boston, MA (2 grants) and New York, NY (2 grants).
Does Friedreich's Ataxia Research Alliance give general operating support?
Not in 2024: none of the 32 grants with a stated purpose on Friedreich's Ataxia Research Alliance's 2024 IRS Form 990 were described as general or operating support. Recurring purposes include "Medical Research" (31 grants).
Who are Friedreich's Ataxia Research Alliance's largest grantees?
Friedreich's Ataxia Research Alliance's largest 2024 grantees include The Broad Institute ($1,945,086), Children's Hospital of Philadelphia Research Institute ($713,919) and Children's Hospital of Philadelphia Foundation ($500,000), according to its 2024 IRS Form 990. Together they received 44% of its itemized 2024 grant dollars.
How large is Friedreich's Ataxia Research Alliance?
Friedreich's Ataxia Research Alliance reported $6.9M in total assets on its 2024 IRS Form 990. Its revenue that year was $13.1M.
What does Friedreich's Ataxia Research Alliance fund?
FARA’s mission is to marshal and focus resources and relationships to cure FA by raising funds for research, promoting public awareness, and aligning scientists, patients, clinicians, government agencies, pharmaceutical companies, and other organizations working to cure FA and related disorders. See mission & focus areas ↑
How do I apply for a grant from Friedreich's Ataxia Research Alliance?
Submit a letter of intent through FARA’s grant portal for opportunities that require one. Eligibility and process details are in the grantmaking section of this profile. See how to apply ↑
What is Friedreich's Ataxia Research Alliance's EIN?
Friedreich's Ataxia Research Alliance's EIN (Employer Identification Number) is 52-2122720. IRS Form 990 filing data is available on this page for 2019–2024.
Data last updated September 2026. Sourced from IRS Form 990 filings. Research dossier generated September 2026.
Here's the math on researching Friedreich's Ataxia Research Alliance by hand.
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