National Ataxia Foundation Inc
- Assets
- $5.0m
- Revenue
- $4.6m
- Investments
- $0.0
- Employees
- 17
- Location
- Minneapolis, MN
- Founding
- 11/1974
- Data as of
- 12/2022
- EIN
- 41-0832903
Organization Overview
National Ataxia Foundation Inc is located in Minneapolis, MN. The organization was established in 1974. According to its NTEE Classification (H99) the organization is classified as: Medical Research N.E.C., under the broad grouping of Medical Research and related organizations. As of 12/2022, National Ataxia Foundation Inc employed 17 individuals. This organization is a parent organization of an affiliated group for tax-exemption purposes. National Ataxia Foundation Inc is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 12/2022, National Ataxia Foundation Inc generated $4.6m in total revenue. This organization has experienced exceptional growth, as over the past 8 years, it has increased revenue by an average of 14.4% each year . All expenses for the organization totaled $4.1m during the year ending 12/2022. While expenses have increased by 11.8% per year over the past 8 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.
Since 2015, National Ataxia Foundation Inc has awarded 146 individual grants totaling $6,161,003. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2022
Describe the Organization's Mission:
Part 3 - Line 1
TO ACCELERATE THE DEVELOPMENT OF TREATMENTS AND A CURE WHILE WORKING TO IMPROVE THE LIVES OF THOSE LIVING WITH ATAXIA.
Describe the Organization's Program Activity:
Part 3 - Line 4a
THE NATIONAL ATAXIA FOUNDATION OFFERS PATIENT EDUCATION, ADVOCACY, AND SUPPORT PROGRAMS TO IMPROVE THE LIVES OF THOSE LIVING WITH ATAXIA. NAF'S PATIENT EDUCATION PROGRAM PROVIDES AN ANNUAL CONFERENCE, WEBINARS, AND FACT SHEETS TO HELP INDIVIDUALS MANAGE THEIR HEALTH AND QUALITY OF LIFE. NAF'S ADVOCACY PROGRAM INVOLVES POLICY MAKERS AND PHARMACEUTICAL COMPANIES TO GROW AWARENESS OF ATAXIA, ACCELERATE DRUG DEVELOPMENT AND ENSURE ACCESS TO CARE AND TREATMENT SERVICES. NAF'S SUPPORT GROUP PROGRAM OFFERS A WAY FOR THE ATAXIA COMMUNITY TO CONNECT AND LEARN FROM OTHERS.
THE NATIONAL ATAXIA FOUNDATION (NAF) ENCOURAGES AND PROMOTES RESEARCH ON HEREDITARY AND SPORADIC ATAXIAS THROUGH THREE RESEARCH FUNDING PROGRAMS: (1) "SEED MONEY" RESEARCH GRANTS; (2) POST DOC FELLOWSHIP AWARDS; AND (3) YOUNG INVESTIGATOR AWARDS. PEER REVIEW IS PROVIDED BY NAF'S MEDICAL AND RESEARCH ADVISORY BOARD MEMBERS AND LEADING ATAXIA SCIENTISTS AND CLINICIANS, BOTH DOMESTIC AND INTERNATIONAL. THE GOALS OF NAF'S RESEARCH PROGRAM ARE TO FURTHER ELUCIDATE THE DISEASE MECHANISM OF ATAXIA, BRING EARLY-CAREER CLINICIANS AND SCIENTISTS INTO ATAXIA RESEARCH AND MOVE THE FIELD TOWARD DEVELOPING TREATMENTS AND A CURE FOR ATAXIA. IN ADDITION, NAF FUNDS THREE PROGRAMS THAT ARE BEYOND THE TRADITIONAL GRANT FUNDING MECHANISM. THESE ARE NON-COMPETITIVE PROGRAMS WHICH INCLUDE THE BRAIN TISSUE DONATION PROGRAM, THE CENTRALIZED ATAXIA GENOMIC CORE AND CLINICAL RESEARCH CONSORTIUM FOR THE STUDY OF CEREBELLAR ATAXIA. BECAUSE OF THE IMPORTANCE OF COLLABORATION AMONG THE MULTI-STAKEHOLDERS FOR ATAXIA RESEARCH, THE FOUNDATION ORGANIZES SCIENTIFIC MEETINGS.
THE NAF DRUG DEVELOPMENT COLLABORATIVE IS A PRE-COMPETITIVE PHARMACEUTICAL INDUSTRY CONSORTIUM WITH A PRINCIPAL GOAL OF ACCELERATING THE DEVELOPMENT OF TREATMENTS FOR ATAXIA. THE GROUP WILL ADDRESS THE MANY SHARED OPPORTUNITIES AND CHALLENGES IN THERAPY DEVELOPMENT FOR THIS COMPLEX NEUROLOGICAL DISEASE. THE COLLABORATIVE PROVIDES A CENTRALIZED SOURCE FOR ACCESS TO RESOURCES NEEDED TO SUPPORT RESEARCH AND DEVELOPMENT OF ATAXIA THERAPIES. MEMBERS WILL BENEFIT FROM THE INTEGRATION OF THE PATIENT EXPERIENCE WITH SOUND ATAXIA SCIENTIFIC AND CLINICAL EXPERTISE. NAF BRINGS MORE THAN 60 YEARS OF EXPERIENCE IN SUPPORTING PATIENTS AND CAREGIVERS AND CONNECTING THEM WITH RESEARCH AND CLINICAL TRIAL OPPORTUNITIES. NAF HAS ALSO FUNDED A NETWORK OF ATAXIA CLINICIANS AT SITES AROUND THE US THAT WILL BE A CRITICAL COMPONENT OF THE COLLABORATIVE'S WORK. 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. THERE WERE TEN MEMBERS OF THE COLLABORATIVE AT THE END OF 2022.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Samuel Kirton President | OfficerTrustee | 5 | $0 |
Linda Snider Vice President | OfficerTrustee | 2 | $0 |
Greg Rooks Treasurer | OfficerTrustee | 2 | $0 |
John Mauro Secretary | OfficerTrustee | 2 | $0 |
David Brunnert Board Member | Trustee | 2 | $0 |
Cindy Demint Board Member | Trustee | 2 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $250,641 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $3,165,254 |
| Noncash contributions included in lines 1a–1f | $9,870 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $3,415,895 |
| Total Program Service Revenue | $1,109,574 |
| Investment income | $70,303 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | -$14,584 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $4,581,188 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $1,483,310 |
| Grants and other assistance to domestic individuals. | $3,071 |
| Grants and other assistance to Foreign Orgs/Individuals | $280,281 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $498,042 |
| Compensation of current officers, directors, key employees. | $40,659 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $697,927 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $145,852 |
| Payroll taxes | $86,020 |
| Fees for services: Management | $80,792 |
| Fees for services: Legal | $10,373 |
| Fees for services: Accounting | $13,000 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $66,694 |
| Advertising and promotion | $21,013 |
| Office expenses | $37,552 |
| Information technology | $0 |
| Royalties | $0 |
| Occupancy | $61,739 |
| Travel | $0 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $492,015 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $11,737 |
| All other expenses | $1,558 |
| Total functional expenses | $4,116,605 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $1,969,164 |
| Savings and temporary cash investments | $1,642,051 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $55,331 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $187,070 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $1,065,945 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $89,034 |
| Total assets | $5,008,595 |
| Accounts payable and accrued expenses | $470,035 |
| Grants payable | $0 |
| Deferred revenue | $22,291 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $89,652 |
| Total liabilities | $581,978 |
| Net assets without donor restrictions | $2,404,811 |
| Net assets with donor restrictions | $2,021,806 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $5,008,595 |
Grants Awarded
Over the last fiscal year, National Ataxia Foundation Inc has awarded $1,267,870 in support to 18 organizations.
| Grant Recipient | Amount |
|---|---|
ARIZONA STATE UNIVERSITY PURPOSE: Research | $50,000 |
BAYLOR COLLEGE OF MEDICINE PURPOSE: Research | $85,000 |
COLUMBIA UNIVERSITY NEW YORK PURPOSE: Research | $70,100 |
DUKE UNIVERSITY MEDICAL CENTER PURPOSE: Research | $75,000 |
EMORY UNIVERSITY PURPOSE: Research | $25,000 |
JOHNS HOPKINS UNIVERSITY DEPARTMENT OF NEUROLOGY PURPOSE: Research | $49,100 |