2026-06-16T11:26:46-05:00 2025-12-31 411397419 Abdo LLP 5201 Eden Ave Ste 250 Edina MN 55436 990 2025-01-01 410832903 National Ataxia Foundation Incorporated NATI 7635530020 PO Box 27986 Minneapolis MN 55427 Andrew Rosen Chief Executive Officer 7635530020 2026-05-29 1 Steven D AnsethCPA P00552219 9528359090 2026-05-13 2025 2025-03-06 01:10:19Z Andrew Rosen PO Box 27986 Minneapolis MN 55427 13051086 0 X https://ataxia.org/ X 1957 MN To accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia. 14 14 23 350 0 0 5859791 10976320 1025514 1811861 96230 262905 -30253 -19024 6951282 13032062 2436737 2459416 0 0 2005553 2252333 0 0 609726 1832835 1407893 6275125 6119642 676157 6912420 4791426 11852332 484274 630748 4307152 11221584 X 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. 0 0 1262194 45267 653080 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. 2745747 1887973 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. 809201 526176 1158781 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. 4817142 1 1 0 0 0 0 0 0 0 0 0 0 1 0 0 0 1 0 0 0 1 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 15 0 1 23 1 0 0 0 0 0 0 0 0 0 0 0 0 X 14 14 0 0 0 0 1 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 MN X X X Andrew Rosen 7635530020 PO Box 27986 Minneapolis MN 55427 Jim Keene President 5.00 X X 0 0 0 David Brunnert Vice President 2.00 X X 0 0 0 David Spotts Treasurer 2.00 X X 0 0 0 Linda Snider Secretary 2.00 X X 0 0 0 Sandi Brettler Board Member 2.00 X 0 0 0 Bryan Tabery Board Member 2.00 X 0 0 0 Jason Gale Board Member 2.00 X 0 0 0 Bryce Suchomel Board Member 2.00 X 0 0 0 Mark Hazlin Board Member 2.00 X 0 0 0 Serena Hung Board Member 2.00 X 0 0 0 Hayley McLoughlin Board Member 2.00 X 0 0 0 Michael Cammer Board Member 2.00 X 0 0 0 Nick Kozauer Board Member 2.00 X 0 0 0 Ann Riley Board Member 2.00 X 0 0 0 Andrew Rosen Chief Executive Officer 40.00 X 194042 0 27705 Kyle Billadeau Vice President 40.00 X 126766 0 25845 Lauren Moore VP and Chief Scientific Of 40.00 X 209482 0 6838 Joel Sutherland Vice President Of Developm 40.00 X 171132 0 0 Richard McCutchen Jr Regional Development Manager 40.00 X 105785 0 7743 807207 0 68131 5 0 1 0 0 235487 10740833 10976320 Drug Development Collaborative 900099 1158781 1158781 Conference income 900099 653080 653080 1811861 262905 262905 0 235487 19024 -19024 -19024 13032062 1811861 0 243881 1884315 1884315 575101 575101 221746 150921 23666 47159 1741806 1194610 179169 368027 58226 38777 6841 12608 84072 55989 9878 18205 146483 101707 14016 30760 39710 30582 2478 6650 16017 16017 18826 18826 6109 6109 136748 71091 59400 6257 342345 179397 150626 12322 104341 18571 76238 9532 68332 13179 50157 4996 56407 28203 17460 10744 597680 472945 43156 81579 15886 15712 174 Professional developmen 5492 1754 3025 713 6119642 4817142 692774 609726 874850 1282222 1063290 283539 17250 218000 171717 194202 2639462 7774369 0 2100000 24857 0 4791426 11852332 72839 103457 311876 256225 74205 271066 25354 0 484274 630748 X 1332082 9352981 2975070 1868603 4307152 11221584 4791426 11852332 6912420 2012 0 X X 0 1 X 1 0 X 2110797 3415910 3083219 5859791 10976320 25446037 2110797 3415910 3083219 5859791 10976320 25446037 8269687 17176350 68653 70303 73728 96230 262905 571819 26017856 5495187 0.66020 0.79580 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 Program related investment 2100000 C 2100000 13164241 2012 117252 119264 13044977 6109 -19024 -12915 13032062 6249809 117252 19024 136276 6113533 6109 6109 6119642 Part XI, Line 4b - Other Adjustments: Fundraising Expenses -19,024. Part XII, Line 2d - Other Adjustments: Fundraising Expenses 19,024. 1 East Asia and the Pacific - Australia, Brunei, Burma, Cambodia, 0 0 Research grants to recipients in the region Research Grants 50000 Europe (Including Iceland & Greenland) - Albania, Andorra, Austria, Belgium 0 0 Research grants to recipients in the region Research Grants 423181 North America - Canada and Mexico, but not the United States 0 0 Research grants to recipients in the region Research Grants 101920 0 0 0 0 0 0 575101 0 575101 North America - Canada and Mexico, but not the United States Research grants to recipients in the region 31550 Transfer 0 Europe (Including Iceland & Greenland) - Albania, Andorra, Austria, Belgium Research grants to recipients in the region 305000 Transfer 0 Europe (Including Iceland & Greenland) - Albania, Andorra, Austria, Belgium Research grants to recipients in the region 18181 Transfer 0 North America - Canada and Mexico, but not the United States Research grants to recipients in the region 20370 Transfer 0 East Asia and the Pacific - Australia, Brunei, Burma, Cambodia, Research grants to recipients in the region 50000 Transfer 0 North America - Canada and Mexico, but not the United States Research grants to recipients in the region 50000 Transfer 0 Europe (Including Iceland & Greenland) - Albania, Andorra, Austria, Belgium Research grants to recipients in the region 50000 Transfer 0 Europe (Including Iceland & Greenland) - Albania, Andorra, Austria, Belgium Research grants to recipients in the region 50000 Transfer 0 8 0 0 0 0 0 0 Part I, Line 2: Grant applications are screened by a multi-level scientific panel and ranked. Recommendations are then presented to the Board who makes the final funding decision. One time grants are paid and a written report in both scientific terms and layperson's terms is required four months after the completion of the research project. For the two SCA Research Programs, a written progress report is also to be submitted six months after the start of the research project. When a paper or exhibit by an awardee, based on the work supported by an NAF grant, is published or presented, all papers, exhibits and press releases shall carry a credit line to the National Ataxia Foundation. Research awards are for direct costs only and cannot be used for indirect costs or institutional overhead. Walk n Roll 235487 235487 13025 1749 4250 235487 235487 13025 1749 4250 19024 -19024 1 University of California San Francisco 550 16th St Floor 4 San Francisco CA 94143 946036493 501c3 5600 0 Research Yale University 2 Whitney Avenue 6th Floor New Haven CT 06510 060646973 501c3 6250 0 Research DNAVisit 13423 Moreton Gln San Diego CA 92130 824144229 N/A 10000 0 Research FedEx 942 South Shady Grove Road Memphis TN 38120 621721435 N/A 17947 0 Research University of Pennsylvania Franklin Building 5th floor 3451 Walnut Street Philadelphia PA 19104 231352685 501c3 24300 0 Research Regents of the University of California Davis 1 Shields Ave Davis CA 95620 946036494 501c3 25000 0 Research Duke University Medical Center 2200 West Main Ste 300 Durham NC 27701 560532129 501c3 25000 0 Research Rush University Medical Center 1201 W Harrison St Suite 300 Chicago IL 60607 362174823 501c3 25000 0 Research Northwestern University 633 Clark St Evanston IL 60208 362167817 501c3 28750 0 Research Johns Hopkins University Department of Neurology 1101 E 33rd St Ste B001 Baltimore MD 21218 520595110 501c3 36200 0 Research University of WashingtonUPIC 4300 Roosevelt Way NE Box 354965 Seattle WA 98105 916001537 501c3 36450 0 Research University of Florida (Microbiology & Neurology) PO Box 100158 Gainesville FL 32611 596002052 501c3 40653 0 Research University of Miami 1531 Brescia Ave Coral Gables FL 33146 590624458 501c3 50000 0 Research Brigham & Women's Hospital Inc 75 Francis St Boston MA 02115 043230035 501c3 50000 0 Research Children's Hospital of Philadelphia 3401 Civic Center Blvd Philadelphia PA 19104 231352166 501c3 50000 0 Research Research Foundation for SUNY obo Univ at Buffalo UB Commons Suite 211 Amherst NY 14228 141368361 501c3 50000 0 Research Greenwood Genetic Center Inc 101 Gregor Mendel Circle Greenwood SC 29646 500604070 N/A 57200 0 Research Science Coach Inc 4340 Duncan Ave Suite 100 Saint Louis MO 63110 873498906 501c3 60000 0 Research Emory University PO Box 935084 Atlanta GA 31193 580566256 501c3 61600 0 Research GeneMatters 611 Gateway Blvd Suite 120 Sourth San Francisco CA 94080 872058405 N/A 63256 0 Research Regents of the University of California Los Angeles 635 Charles E Young Dr S Los Angeles CA 90095 956006143 501c3 71400 0 Research Indiana University - Purdue PO Box 78000 Dept 78920 Detroit MI 48278 356001673 501c3 72608 0 Research Regents of the University of California dba University of California Irvin 228 Aldrich Hall Irvine CA 92697 952226406 501c3 75000 0 Research Massachusetts General Hospital 125 Nashua St Suite 540 Boston MA 02114 041564655 501c3 84000 0 Research University of North Carolina Chapel Hill 104 Airport Dr Suite 2200 CB 1350 Chapel Hill NC 27599 566001393 501c3 85000 0 Research Regents of the University of Michigan 5082 Wolvertine Tower Ann Arbor MI 48109 386006309 501c3 89450 0 Research Columbia University New York 615 West 131st St 3rd Fl New York NY 10027 135598093 501c3 101150 0 Research University of South Florida 4202 E Folwer Ave SVC 1039 Tampa FL 33620 593102112 501c3 102852 0 Research University of Texas Southwestern 5323 Harry Hines Blvd Dallas TX 75390 756002868 501c3 111369 0 Research University of Chicago 6054 South Drexel Avenue Chicago IL 60637 362177139 501c3 122384 0 Research Regents of the University of MN PO Box 1450 Minneapolis MN 55485 416007513 501c3 196568 0 Research 26 6 Part I, Line 2: Grant applications are screened by a multi-level scientific panel and ranked. Recommendations are then presented to the Board who makes the final funding decision. One time grants are paid and a written report in both scientific terms and layperson's terms is required four months after the completion of the research project. For the two SCA Research Programs, a written progress report is also to be submitted six months after the start of the research project. When a paper or exhibit by an awardee, based on the work supported by an NAF grant, is published or presented, all papers, exhibits and press releases shall carry a credit line to the National Ataxia Foundation. Research awards are for direct costs only and cannot be used for indirect costs or institutional overhead. 1 X 0 0 0 0 0 0 0 0 0 Andrew Rosen Chief Executive Officer 194042 0 0 0 0 0 0 0 27705 0 221747 0 0 0 Lauren Moore VP and Chief Scientific Of 209482 0 0 0 0 0 0 0 6838 0 216320 0 0 0 Joel Sutherland Vice President Of Developm 171132 0 0 0 0 0 0 0 0 0 171132 0 0 0 Kyle Billadeau Vice President 126766 0 0 0 0 0 0 0 25845 0 152611 0 0 0 Form 990, Part VI, Section A, line 6 The Foundation has free memberships. Members do not having voting rights. Form 990, Part VI, Section B, line 11b The form 990 is prepared by the Certified Public Accountant with the help of the Chief Executive Officer. The preliminary form is reviewed as needed. The form 990 is then prepared and is presented at an Executive Committee or Board Meeting prior to the return being signed and submitted to the Internal Revenue Service. Form 990, Part VI, Section B, line 12c Each responsible person (officer, employee or board member) shall annually complete a disclosure form identifying any relationships, positions or circumstances which could contribute to a potential conflict of interest. Prior to Board or Committee action, all facts shall be disclosed relating to the protential conflict of interest and such disclosure will be reflected in the minutes of the meeting. The person cannot be counted towards having a quorum to vote and is not allowed to vote on the issue. They are also not allowed to exert any personal influence in the matter. The policy shall be reviewed annually by each member of the Executive Committee. Form 990, Part VI, Section B, line 15 Chief Executive Officer's position - an annual review is conducted by the Foundation's President. The performance review is based on achieving the annual goals of the Foundation. The President annually evaluates the performance in a written report and then presents the review and recommendations to the Board/Executive Committee who determine any actions, including pay raises. Other Employees - The Chief Executive Officer annually evaluates the performance of employees in a written reported saved in each employee's permanent file. The Chief Executive Officer has a salary budget as set by the full Board of Directors. The Chief Executive Officer has full discretion on the percentage of pay raises to individuals not to exceed the approved budget. Form 990, Part VI, Section C, line 19 The Foundation will furnish all requests for organizing documents, conflict of interest policies and financial statements upon request. The financial statements are posted on the Foundation's website. The 990 is also available on Guidestar.org and Candid.org. Form 990, Part XII, Line 2c: The Foundation's Finance Committee is responsible for the oversight of the audit.