Friedreich's Ataxia Research Alliance
Friedreich's Ataxia Research Alliance reported $13.1 million in revenue and $13.3 million in expenses for calendar year 2024. Of every $100 it spent, $94.40 went to program services, $2.82 to management and general costs and $2.78 to fundraising. Its largest source of revenue was contributions and grants: 102.9% of the total. The highest compensation it reported for one person was $255,527 (CHIEF SCIENTIFIC OFFICER). 5 people received more than $100,000 in reportable compensation. Revenue rose 86% between 2019 and 2024. Source: Form 990, 2024.
Where $100 of spending went
Calendar year 2024 · Form 990, Part IX, line 25 · total expenses $13MFor context, the median across 169 covered medical research charities: $87.02 programs, $12.87 management, $0.11 fundraising (medians computed separately, so they may not sum to $100).
Where $100 of revenue came from
Calendar year 2024 · Form 990, Part VIII · total revenue $13MOther revenue was negative: −$554K. The bar shows the positive sources only.
The 990 scorecard · same measures for every charity, no grades
| Measure | 2024 | Median |
|---|---|---|
| Program services Part IX 25(B) ÷ 25(A) | 94.4% | 83.9% |
| Management & general Part IX 25(C) ÷ 25(A) | 2.8% | 12.4% |
| Fundraising Part IX 25(D) ÷ 25(A) | 2.8% | 0.1% |
| Fundraising cost per $1 of contributions Part IX 25(D) ÷ Part VIII 1h | $0.03 | $0.01 |
| Contributions & grants share of revenue Part VIII 1h ÷ 12 | 102.9% | 72.7% |
| Government grants share of revenue Part VIII 1e ÷ 12 | 0.0% | 0.0% |
| Program service revenue share Part VIII 2g ÷ 12 | 0.0% | 5.8% |
| Highest reported compensation Part VII-A, columns D–F | $255,527 | $628,890 |
| Highest compensation as share of expenses Part VII-A ÷ Part IX 25(A) | 1.92% | 1.94% |
| People paid over $100,000 Part VII, line 2 | 5 | 18 |
| Net assets, in months of expenses Part X 33(B) ÷ monthly expenses | 5.7 | 13.3 |
| Independent voting board members Part VI 1a–1b | 17 of 19 | 93.8% |
A median is context, not a target: hospitals, universities, food banks and grantmakers spend in very different ways. What these measures can and can't tell you.
What the money paid for, in its own words
2024 · Form 990, Part III · the three largest programs by expenseClinical 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…
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…
Highest reported compensation
2024 · Form 990, Part VII, Section A · roles as filed; names are in the filing, not here| Role | From this org | From related orgs | Other | Total |
|---|---|---|---|---|
| CHIEF SCIENTIFIC OFFICER Highest compensated employee, 40.00 hrs/week | $250,000 | $0 | $5,527 | $255,527 |
| CHIEF EXECUTIVE OFFICER Officer, 40.00 hrs/week | $165,000 | $0 | $5,678 | $170,678 |
| DIRECTOR OF RESEARCH Highest compensated employee, 40.00 hrs/week | $115,851 | $0 | $16,023 | $131,874 |
| VP FUNDRAISING & COMMS Highest compensated employee, 40.00 hrs/week | $106,351 | $0 | $12,292 | $118,643 |
| PRESIDENT/DIRECTOR Director/trustee, officer, 40.00 hrs/week | $110,000 | $0 | $3,811 | $113,811 |
| TREASURER/DIRECTOR FINANCE Director/trustee, officer, 25.00 hrs/week | $51,000 | $0 | $16,964 | $67,964 |
5 people received more than $100,000 in reportable compensation from Friedreich's Ataxia Research Alliance (Part VII, line 2). Compensation of current officers, directors and key employees totaled $352K (Part IX, line 5).
6 years of filings
Form 990, Parts I, VII, IX and X · each row is that year's own filing, linkedGovernance answers, as filed
2024 · the organization's own yes/no answers; explanations, if any, are in Schedule O of the filing · what each means- Voting board members, and how many are independent Part VI, lines 1a–1b19 · 17 independent
- Audited financial statements Part XII 2bYes
- Conflict-of-interest policy Part VI 12aYes
- Whistleblower policy Part VI 13Yes
- Document retention policy Part VI 14Yes
- Independent process for top executive pay Part VI 15aYes
- Board given the 990 before filing Part VI 11aYes
- Family or business ties among insiders Part VI 2No
- Aware of a significant diversion of assets Part VI 5No
- Excess benefit transaction with an insider Part IV 25aNo
- Loans to or from insiders outstanding Part IV 26No
- Lobbying, or a 501(h) election in effect Part IV 4Yes
- Over $15,000 of professional fundraising services Part IV 18No
- Over $10,000 of activity outside the U.S. Part IV 14bYes
- Employees Part I, line 519
- Volunteers Part I, line 6500
Largest outside contractors
2024 · Form 990, Part VII, Section B · businesses only| CAMENE BVBA-MYRIAM ABOUAZAR-RAI International research and advocacy cons | $132,135 |
Individuals listed as contractors are left out. 1 contractors were paid more than $100,000 in all.
Private foundation grants it received
34 private foundations reported grants to Friedreich's Ataxia Research Alliance totaling $3.5M on their tax year 2023 Form 990-PF returns. See which foundations, on WHOFUNDS.
Source: WHOFUNDS open grant graph, matched from Form 990-PF Part XV.
Correct a figure or respond
Every number above is copied from Friedreich's Ataxia Research Alliance's own Form 990. If one doesn't match the filing, that's our error and we'll fix it. If you work for Friedreich's Ataxia Research Alliance, you can publish a response that is linked from this page.
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Of every $100 Friedreich's Ataxia Research Alliance spent in 2024, $94.40 went to programs. The full breakdown, from its IRS Form 990:
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Questions people ask
How much of Friedreich's Ataxia Research Alliance's spending goes to programs?
In calendar year 2024, Friedreich's Ataxia Research Alliance reported that 94.4% of its $13.3 million in expenses went to program services, 2.8% to management and general and 2.8% to fundraising (Form 990, Part IX).
How much does Friedreich's Ataxia Research Alliance pay its top executive?
The largest total compensation Friedreich's Ataxia Research Alliance reported for one person in calendar year 2024 was $255,527, for the role of CHIEF SCIENTIFIC OFFICER (Form 990, Part VII, including compensation from related organizations and other compensation).
Where does Friedreich's Ataxia Research Alliance get its money?
Of $13.1 million in revenue in calendar year 2024, 102.9% came from contributions and grants and 0.0% from program service revenue (Form 990, Part VIII).
Is Friedreich's Ataxia Research Alliance a registered charity?
The IRS lists EIN 52-2122720 as a 501(c)(3) organization (publicly supported organization (170(b)(1)(a)(vi))), and its records show contributions as tax-deductible. Form 990 filings on record here cover tax years 2019, 2020, 2021, 2022, 2023, 2024. A filing shows what the organization reported; it doesn't by itself show whether a program works.
Sources
- 2024: Form 990 for calendar year 2024, object 202542899349301714 · read the filing · XML
- 2023: Form 990 for calendar year 2023, object 202432269349301073 · read the filing
- 2022: Form 990 for calendar year 2022, object 202301959349300445 · read the filing
- 2021: Form 990 for calendar year 2021, object 202232179349300603 · read the filing
- 2020: Form 990 for calendar year 2020, object 202141339349302974 · read the filing
- 2019: Form 990 for calendar year 2019, object 202001409349300915 · read the filing
All filings for EIN 52-2122720: ProPublica Nonprofit Explorer · IRS Tax Exempt Organization Search. Figures are as the organization reported them; we have not audited them.