Virginia · Nonprofit
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE (Virginia) receives grants from 126 organizations whose IRS filings report $31,555,763 to it, the largest being THE CHRISTINA FOUNDATION ($17,461,084). 66 of them have funded it in more than one year.
- Revenue FY2024
- $13M
- Funders on record
- 126
- Grants received
- $32M
- Net assets
- $6.3M
What Friedreich's Ataxia Research Alliance does
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, government agencies and pharmaceutical companies dedicated to curing fa and related disorders.
As stated on its FY2024 Form 990.
Programs
Research and grant program - see schedule o
$10,330,478 spentof which $9,606,747 as grants82% of program spendingClinical 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…
$1,354,745 spentof which $781,063 as grants11% of program spendingAwareness, 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…
$491,179 spentof which $80,000 as grants4% of program spendingWorkshops, 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.…
$357,617 spent3% of program spending
The 4 programs described on its FY2024 Form 990, listed largest first by expense. Program spending in total: $12,534,019.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2019 to 2020, from $4.2M to $9.3M (+122%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
Government-grant reliance: 2020 1% · 2021 3%. Grants only. Government contracts and fees sit inside program revenue.
103% of FRIEDREICH'S ATAXIA RESEARCH ALLIANCE’s revenue is contributions — more reliant on donations than three-quarters of its peers (7% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 5 of the last 8 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Jennifer M Farmer
Chief executive officer
Board chair
Paul Avery
Chairman/ director
As listed on its FY2024 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 22 funders to 43 funders, grant income rose $1.6M → $4.2M.
32 of 126 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 14% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of FRIEDREICH'S ATAXIA RESEARCH ALLIANCE’s funders (the co-funder graph). Top 30 of 126 funders by total. Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE leans on a few funders — its largest provides 55% of grant income and the top three 81%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
38% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund FRIEDREICH'S ATAXIA RESEARCH ALLIANCE.
Largest funder’s share by year: 2017 78% · 2018 77% · 2019 63% · 2020 89% · 2021 63% · 2022 54% · 2023 77% — broadly stable.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
34% of FRIEDREICH'S ATAXIA RESEARCH ALLIANCE's funders are still giving 3 years after their first grant; 52% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE draws 100% of its grant income from funders outside Virginia, across 23 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $4.3M arriving through sponsors registered in 22 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
FRIEDREICH'S ATAXIA RESEARCH ALLIANCE is better cushioned than half of the 4,580 health nonprofits its size.
this organization peer median middle 50% of peers· 4,580 health nonprofits $10M–$100M, FY2024
Organizations like FRIEDREICH'S ATAXIA RESEARCH ALLIANCE
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Virginia
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
94% of spending goes to programs.
Governance
Public support
70%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 37 states
Part of a family of 1 related entity
- Stichting Friedreich's Ataxia Research Alliance Europe · exempt
Screen this organization
A dated, signed PDF of the compliance screen for FRIEDREICH'S ATAXIA RESEARCH ALLIANCE: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds FRIEDREICH'S ATAXIA RESEARCH ALLIANCE?
- FRIEDREICH'S ATAXIA RESEARCH ALLIANCE (Virginia) receives grants from 126 organizations whose IRS filings report $31,555,763 to it, the largest being THE CHRISTINA FOUNDATION ($17,461,084). 66 of them have funded it in more than one year.
- How many funders does FRIEDREICH'S ATAXIA RESEARCH ALLIANCE have?
- IRS filings report 126 organizations giving $31,555,763 in grants to FRIEDREICH'S ATAXIA RESEARCH ALLIANCE, 66 of which have funded it in more than one year.
- Who is the largest funder of FRIEDREICH'S ATAXIA RESEARCH ALLIANCE?
- THE CHRISTINA FOUNDATION is the largest funder on record, with $17,461,084 in grants. The full list of funders is on this page.
- How can an organization like FRIEDREICH'S ATAXIA RESEARCH ALLIANCE find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Virginia. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2024 (financials across 2017–2024), and the filings of 126 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 22, 2026. What this page cannot tell you · view filing