National Ataxia Foundation Incorporated

Nonprofit profile at a glance

EIN
410832903
IRS 990 coverage
2010–2025
Forms available
Form 990 2025
Location
Minneapolis, MN, USA
Phone
7635530020
Rating
69
Verdict
SUPPORTED
Rating confidence
Moderate

Official website

Reported finances

Revenue
$13,032,062
Expenses
$6,119,642
Assets
$11,852,332
Liabilities
$630,748

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

19 people listed

Executive titles in this filing

  • Jim Keene (President)
  • David Brunnert (Vice President)
  • Andrew Rosen (Chief Executive Officer)
  • Kyle Billadeau (Vice President)
  • Joel Sutherland (Vice President Of Developm)

Highest reported compensation

  • Andrew Rosen (Chief Executive Officer): $221,747 total reported compensation
  • Lauren Moore (VP and Chief Scientific Of): $216,320 total reported compensation
  • Joel Sutherland (Vice President Of Developm): $171,132 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

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.

What it reported doing in 2025

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.

Operating model

Revenue model
Donor-supported. 84% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 49% for direct work, and 51% for grants.

The verdict

SUPPORTED - Most voting board members are independent and the filed numbers largely add up. A relatively small share of available resources goes toward mission work and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 53
  • Transparency & Controls: 65
  • Accountability: 100
  • Sustainability: 69
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 38.2%; rating input score 38
  • Program expense ratio: 78.7%; rating input score 79
  • Fundraising efficiency: $18 raised per $1 spent on fundraising; rating input score 51; 51st percentile among comparable filings

Transparency & Controls

  • Consistency checks: 93.3%; rating input score 93; 16th percentile among comparable filings
  • Pay-setting controls: 1 of 6 controls in place; rating input score 17
    • Compensation committee: Missing
    • Independent consultant: Missing
    • Other Form 990s reviewed: Missing
    • Written employment contract: Missing
    • Compensation survey or study: Missing
    • Board or committee approval: Pass
  • Foreign activity oversight: 2 of 8 controls in place; rating input score 25
    • Claims monitoring procedures: Pass
    • Requires narrative reports: Pass
    • Conducts field audits: Limited
    • May suspend future funding: Limited
    • Requires financial reports: Limited
    • Conducts site visits: Limited
    • Requires grant agreements: Limited
    • May require repayment: Limited
  • Grant itemization coverage: 98.7%; rating input score 99; 41st percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 64th percentile among comparable filings
  • Governance controls: 9 of 9 controls in place; rating input score 100
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: Pass
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 53%; rating input score 92; 92nd percentile among comparable filings
  • Total-asset coverage ratio: 1.94; rating input score 51; 51st percentile among comparable filings
  • Liabilities to assets ratio: 0.05; rating input score 76; 76th percentile among comparable filings
  • Officer compensation ratio: 14.3%; rating input score 13; 13th percentile among comparable filings

Growth

  • Program expense growth: 11.7% per year; rating input score 100; 73rd percentile among comparable filings
  • Revenue growth: 13.3% per year; rating input score 100; 83rd percentile among comparable filings
  • Asset growth: 12.1% per year; rating input score 100; 74th percentile among comparable filings

Details

  • Where the money goes: 38.2% of revenue deployed · 78.7% of spending went to programs
  • Governance: 14 of 14 board members independent · 9 of 9 filing controls reported
  • Programs: 3 filed program accomplishments · $4.8M in reported program spending
  • Leadership: top reported pay $222K · 19 people listed · 1 of 6 pay-setting controls reported
  • Consistency: 35 of 36 current checks pass · 1 finding to review
  • Schedules: 8 filed schedules · includes major donors, foreign activity, grants, and executive pay
  • Filing history: 16 filing years from 2010 to 2025
  • Contacts: How to reach this organization
  • Money network: 36 filed money-flow records
  • Related organizations: 31 filed related-organization links
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • Moderate — Financial Efficiency: Mission deployment rate scored 38/100.
  • Review — Financial Efficiency: Fundraising efficiency scored 51/100.
  • Review — Sustainability: Total-asset coverage ratio scored 51/100.
  • High — Sustainability: Officer compensation ratio scored 13/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.