Nonprofit · EIN 41-0832903
NATIONAL ATAXIA FOUNDATION INC
Tax-exempt · MINNEAPOLIS, MN 55427
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990 | $13,032,062 | $6,119,642 | $6,912,420 | $11,852,332 | $630,748 | $11,221,584 |
| December 31, 2024 | 990 | $6,951,282 | $6,275,125 | $676,157 | $4,791,426 | $484,274 | $4,307,152 |
| December 31, 2023 | 990 | $3,981,625 | $4,863,570 | -$881,945 | $4,116,826 | $501,880 | $3,614,946 |
Financial details: 990 for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $10,976,320
- Program service revenue
- $1,811,861
- Investment income
- $262,905
- Net income from fundraising events
- -$19,024
- Other revenue
- -$19,024
Expenses
- Grants and similar amounts paid
- $2,459,416
- Compensation of officers, directors and key employees
- $221,746
- Other salaries and wages
- $1,741,806
- Salaries, compensation and benefits (total)
- $2,252,333
- Professional fundraising fees
- $0
- Legal fees
- $16,017
- Accounting fees
- $18,826
- Occupancy
- $56,407
- Program services (functional)
- $4,817,142
- Management and general (functional)
- $692,774
- Fundraising (functional)
- $609,726
Balance sheet and other
- Total assets, start of year
- $4,791,426
- Total assets, end of year
- $11,852,332
- Total liabilities, end of year
- $630,748
- Net assets, end of year
- $11,221,584
- Publicly traded securities
- $7,774,369
- Net assets without donor restrictions
- $9,352,981
- Net assets with donor restrictions
- $1,868,603
- Gross receipts
- $13,051,086
- Employees
- 23
- Volunteers
- 350
- Year formed
- 1957
- State of legal domicile
- MN
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| Andrew Rosen | Chief Executive Officer Officer | 40 | $194,042 | $27,705 |
| Lauren Moore | VP and Chief Scientific Of Highest-paid employee | 40 | $209,482 | $6,838 |
| Joel Sutherland | Vice President Of Developm Highest-paid employee | 40 | $171,132 | $0 |
| Kyle Billadeau | Vice President Highest-paid employee | 40 | $126,766 | $25,845 |
| Richard McCutchen Jr | Regional Development Manager Highest-paid employee | 40 | $105,785 | $7,743 |
| Jim Keene | President Trustee or director, Officer | 5 | $0 | $0 |
| David Brunnert | Vice President Trustee or director, Officer | 2 | $0 | $0 |
| David Spotts | Treasurer Trustee or director, Officer | 2 | $0 | $0 |
| Linda Snider | Secretary Trustee or director, Officer | 2 | $0 | $0 |
| Sandi Brettler | Board Member Trustee or director | 2 | $0 | $0 |
| Bryan Tabery | Board Member Trustee or director | 2 | $0 | $0 |
| Jason Gale | Board Member Trustee or director | 2 | $0 | $0 |
| Bryce Suchomel | Board Member Trustee or director | 2 | $0 | $0 |
| Mark Hazlin | Board Member Trustee or director | 2 | $0 | $0 |
| Serena Hung | Board Member Trustee or director | 2 | $0 | $0 |
4 more people on this return
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Hayley McLoughlin | Board Member Trustee or director | 2 | $0 |
| Michael Cammer | Board Member Trustee or director | 2 | $0 |
| Nick Kozauer | Board Member Trustee or director | 2 | $0 |
| Ann Riley | Board Member Trustee or director | 2 | $0 |
990 for the year ended December 31, 2024: 18 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| Andrew Rosen | Chief Executive Officer Officer | 40 | $195,170 | $53,379 |
| Lauren Moore | VP and Chief Scientific Of Highest-paid employee | 40 | $198,996 | $32,026 |
| Joel Sutherland | Vice President Of Development Highest-paid employee | 40 | $160,306 | $36,393 |
| Kyle Billadeau | Vice President Highest-paid employee | 40 | $104,157 | $42,434 |
| Jim Keene | President Trustee or director, Officer | 5 | $0 | $0 |
| David Brunnert | Vice President Trustee or director, Officer | 2 | $0 | $0 |
| David Spotts | Treasurer Trustee or director, Officer | 2 | $0 | $0 |
| Linda Snider | Secretary Trustee or director, Officer | 2 | $0 | $0 |
| Sandi Brettler | Board Member Trustee or director | 2 | $0 | $0 |
| Bryan Tabery | Board Member Trustee or director | 2 | $0 | $0 |
| Jason Gale | Board Member Trustee or director | 2 | $0 | $0 |
| Bryce Suchomel | Board Member Trustee or director | 2 | $0 | $0 |
| Mark Hazlin | Board Member Trustee or director | 2 | $0 | $0 |
| Serena Hung | Board Member Trustee or director | 2 | $0 | $0 |
| Hayley McLoughlin | Board Member Trustee or director | 2 | $0 | $0 |
| Michael Cammer | Board Member Trustee or director | 2 | $0 | $0 |
| Denise Kolpack | Board Member Trustee or director | 2 | $0 | $0 |
| Ann Riley | Board Member Trustee or director | 2 | $0 | $0 |
990 for the year ended December 31, 2023: 19 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| Andrew Rosen | Chief Executive Officer Officer | 40 | $186,696 | $12,376 |
| Lauren Moore | VP and Chief Scientific Officer Key employee | 40 | $189,726 | $5,083 |
| Joel Sutherland | VP of Development Key employee | 40 | $151,534 | $7,856 |
| Samuel Kirton | President Trustee or director, Officer | 5 | $0 | $0 |
| Linda Snider | Vice President Trustee or director, Officer | 2 | $0 | $0 |
| Greg Rooks | Treasurer Trustee or director, Officer | 2 | $0 | $0 |
| John Mauro | Secretary Trustee or director, Officer | 2 | $0 | $0 |
| David Brunnert | Board Member Trustee or director | 2 | $0 | $0 |
| Cindy DeMint | Board Member Trustee or director | 2 | $0 | $0 |
| Michael Cammer | Board Member Trustee or director | 2 | $0 | $0 |
| Jim Keene | Board Member Trustee or director | 2 | $0 | $0 |
| Greg Klassen | Board Member Trustee or director | 2 | $0 | $0 |
| Ann Riley | Board Member Trustee or director | 2 | $0 | $0 |
| Denise Kolpack | Board Member Trustee or director | 2 | $0 | $0 |
| John Dwyer | Board Member Trustee or director | 2 | $0 | $0 |
| Serena Hung | Board Member Trustee or director | 2 | $0 | $0 |
| Hayley McLoughlin | Board Member Trustee or director | 2 | $0 | $0 |
| David Spotts | Board Member Trustee or director | 2 | $0 | $0 |
| Mark Hazlin | Board Member Trustee or director | 2 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- PO BOX 27986, MINNEAPOLIS, MN 55427-0986
- Principal officer (990 for 2025)
- Andrew Rosen, PO Box 27986, Minneapolis, MN 55427
- Signed the 990
- Andrew Rosen, Chief Executive Officer
- Phone
- (763) 553-0020
- Website
- https://ataxia.org/
- Return prepared by
- Abdo LLP
Mission
The National Ataxia Foundation's mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.
Program accomplishments
- Increased awareness about hereditary and sporadic ataxia disorders is promoted through a variety of education programs and materials for ataxia families, researchers, physicians, allied health professionals, government agencies, legislative officials and the general public. The Foundation publishes Generations, an annual newsletter and a monthly e-newsletter devoted to ataxia related articles including the latest research and other information beneficial to individuals with ataxia. The Foundation also offers several webinars throughout the year on current topics relevant to the ataxia community. Other educational materials, such as books, videos and fact sheets are provided to persons with ataxia, family members and health care professionals on a "direct request" basis through the NAF office. The Foundation's advocacy activities, such as Hill Days, serve to raise awareness about ataxia and policy issues impacting the ataxia community. The annual ataxia conference, and sponsorship and/or participation in national and international meetings, symposiums and seminars also serve to increase ataxia awareness.The National Ataxia Foundation attempts to locate people and families with hereditary and sporadic ataxia in order to provide them with information about ataxia. This is accomplished by providing updated information about ataxia to the general public by maintaining a website, social media channels, newsletters, and webinars. The Foundation assists individuals and families by identifying clinical resources and making appropriate referrals for neurological care, genetic counseling and gene testing. The Foundation also assists people with locating resources within their own communities, including support groups. The Foundation's network of support groups throughout the country provides families with access to in-person and virtual meeting opportunities.Expenses $1,262,194 · grants $45,267 · revenue $653,080
- NAF is committed to funding cutting-edge basic and translational research into hereditary and sporadic ataxia. The goals of NAF's research program are to further elucidate the disease mechanisms of ataxias, bring early-career clinicians and scientists into ataxia research, and help drive the field towards developing treatments and a cure for ataxia. Annual grants are selected through a competitive review process that includes NAF's Medical and Research Advisory Board members and over 80 leading ataxia scientists and clinicians, both domestic and international. Each year NAF awards grants to researchers from domestic and international non-profit and for-profit institutions that directly support basic and translational ataxia research through the following funding mechanisms:1. Pioneer SCA3 Translational Research Awards: Annually granted to outstanding research proposals that aim to make significant advancements in the development of treatments and/or improvements to patient care for Spinocerebellar Ataxia Type 3 (SCA3). Proposals may incorporate other forms of ataxia but must have a predominant focus on SCA3 translational or clinical research. 2. Seed Money Research Grant: Granted primarily as "seed monies" to assist investigators in the early or pilot phase of their studies and as additional support for ongoing investigations on demonstration of need. It is hoped that these studies will be further developed to attract future funding from other sources. 3. Post-doctoral Fellowship Award: Post-doctoral fellowship awards are to serve as a bridge from post-doctoral positions to junior faculty positions. Applicants should have completed at least one year of post-doctoral training, but not more than two at the time of application and should have shown a commitment to research in the field of ataxia. The award will permit individuals to spend an additional third year in a post-doctoral position and increase chances to establish an independent ataxia research program.4. Early Career Investigator Award: The Early Career Investigator Award was created to encourage early career clinical and scientific investigators to pursue a career in the field of ataxia research. 5. Pre-doctoral Fellowship to Promote Diversity in Ataxia Research: Merit-based award intended to enhance research and/or clinical training of promising graduate students from historically underrepresented backgrounds who are matriculated in pre-doctoral or clinical health professional degree training programs and who intend careers as scientists or other clinician-scientists within the field of ataxia. 6. National Ataxia Foundation Graduate Research Fellowship: The National Ataxia Foundation Graduate Research Fellowship is a competitive, non-renewable, merit-based award intended to encourage pre-doctoral students to pursue research and a career in the field of ataxia. 7. NAF Special Grants: Based on the emergent needs of the patient and research community, priority areas of ataxia research may be identified as eligible for specialized grant funding by NAF and may be awarded outside of the annual grant programs. One of these programs is the NAF Ataxia Brain Tissue Donation Program (In Memory of Carol Tate). NAF has partnered with the University of Maryland Brain and Tissue Bank (UMBTB) to relaunch the Ataxia Brain Tissue Donation Program. Brain tissue helps researchers advance our understanding of ataxia and to develop new therapies. NAF finacially supports brain donors from rural and remote communities to donate to the University of Maryland Brain and Tissue Bank.Expenses $2,745,747 · grants $1,887,973
- Funding for several of NAF's other key clinical research programs are provided through the NAF Drug Development Collaborative (DDC). The DDC is a pre-competitive pharmaceutical industry consortium with a principal goal of accelerating the development of treatments for ataxia. The Collaborative provides a centralized source for access to resources needed to support research and development of Ataxia therapies. Specific objectives of the Collaborative include natural history and bio sample data collection, development of biomarkers, validation of rating scales, clinical trial design, patient-reported outcomes, and other data necessary for the development and approval of safe and effective therapies. Two significant programs that are largely sponsored by the DDC include:1. No-cost Genetic Counseling and Testing Initiative: This program provides virtual genetic counseling and testing for individuals at-risk for three of the most common dominant ataxias to members at no-cost to participants. The aim of this program is to help individuals overcome barriers that have historically inhibited wide-spread genetic testing as well as support drug development through expanding the patient population eligible for future clinical trials.2. Clinical Research Consortium for the Study of Cerebellar Ataxia (CRC-SCA) Natural History Study: The CRC-SCA is one of the longest running and largest natural history studies of spinocerebellar ataxias (SCAs). A natural history study collects data that shows how a specific disease progresses in individuals over time. Natural history studies are essential for developing clinical trial designs that will facilitate drug development. There are over 300 patients enrolled at 16 CRC-SCA sites in the US and Canada. During annual visits, site investigators collect critical clinical data to aid in understanding disease progression and help guide future clinical trial design. Biofluids, such as plasma, serum, and cerebrospinal fluid, are also collected from patients and stored at the NINDS SCA-BRAC biorepository. Both deidentified clinical data and biofluids are available for request from non-participating investigators for approved research projects.Expenses $809,201 · grants $526,176 · revenue $1,158,781
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990 on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 41-0832903
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Group exemption
- Exempt since
- 1974
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Group exemption
- 2578
- Assets (IRS master file)
- $11,852,332
- Income (IRS master file)
- $13,051,086
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2025 | $13,032,062 | $6,119,642 | $11,852,332 | XML |
| 990 | December 2024 | $6,951,282 | $6,275,125 | $4,791,426 | XML |
| 990 | December 2023 | $3,981,625 | $4,863,570 | $4,116,826 | XML |
| 990 | December 2022 | $4,581,188 | $4,116,605 | $5,008,595 | IRS |
| 990 | December 2021 | $2,867,520 | $2,585,574 | $4,406,293 | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 41-0832903).
Questions about NATIONAL ATAXIA FOUNDATION INC
- What is the EIN of NATIONAL ATAXIA FOUNDATION INC?
- The employer identification number (EIN) of NATIONAL ATAXIA FOUNDATION INC is 41-0832903.
- Is NATIONAL ATAXIA FOUNDATION INC tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1974.
- Are donations to NATIONAL ATAXIA FOUNDATION INC tax-deductible?
- Yes. It is listed in IRS Publication 78 (Group exemption).
- Which annual return does NATIONAL ATAXIA FOUNDATION INC file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of NATIONAL ATAXIA FOUNDATION INC due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did NATIONAL ATAXIA FOUNDATION INC last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2025.
- Who is the principal officer of NATIONAL ATAXIA FOUNDATION INC?
- The 990 for the year ended December 31, 2025 names Andrew Rosen.
- Who are the officers and directors of NATIONAL ATAXIA FOUNDATION INC?
- The 990 for the year ended December 31, 2025 lists 19 people; 5 received compensation from the organization, the highest $194,042 (Andrew Rosen, Chief Executive Officer).
- How much revenue does NATIONAL ATAXIA FOUNDATION INC have?
- On its 990 for the year ended December 31, 2025 it reported revenue of $13,032,062, expenses of $6,119,642 and total assets of $11,852,332 at year end.
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