2025-06-05T10:42:06-05:00 2024-12-31 411397419 Abdo LLP 5201 Eden Ave Ste 250 Edina MN 55436 990 2024-01-01 410832903 National Ataxia Foundation Incorporated NATI 7635530020 PO Box 27986 Minneapolis MN 55427 Andrew Rosen Chief Executive Officer 7635530020 2025-06-04 1 0 Steven D AnsethCPA P00552219 9528359090 2025-05-28 2024 2025-03-06 01:10:19Z Andrew Rosen PO Box 27986 Minneapolis MN 55427 6981535 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 22 350 0 0 3083219 5859791 835649 1025514 73728 96230 -10971 -30253 3981625 6951282 1749340 2436737 0 0 1731406 2005553 0 0 557572 1382824 1832835 4863570 6275125 -881945 676157 4116826 4791426 501880 484274 3614946 4307152 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 1615459 32761 308264 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. 2646652 1775918 0 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. In addition to NAF annual grants, NAF sponsors several clinical research programs that aim to drive advancements in the ataxia research field and prepare the ataxia community for future clinical trials. One of these programs is the Ataxia Tissue and Brain Donation Program. NAF and the University of Florida's Center for NeuroGenetics (CNG) work together to maintain a repository of brain and spinal cord tissue from ataxia donors. This tissue is available to SCA researchers to help advance our understanding of these diseases and to develop new therapies. NAF sponsors both the costs of tissue donation and maintenance costs of the brain and tissue bank. 889490 628058 717250 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. 5151601 1 1 0 0 0 0 0 0 0 0 0 0 0 0 1 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 21 0 1 22 1 0 0 CA 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 Andrew Rosen Chief Executive Officer 40.00 X 195170 0 53379 Lauren Moore VP and Chief Scientific Of 40.00 X 198996 0 32026 Joel Sutherland Vice President Of Development 40.00 X 160306 0 36393 Jim Keene President 5.00 X X 0 0 0 Kyle Billadeau Vice President 40.00 X 104157 0 42434 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 Denise Kolpack Board Member 2.00 X 0 0 0 Ann Riley Board Member 2.00 X 0 0 0 658629 0 164232 4 0 1 0 0 239729 5620062 5859791 Drug Development Colla 900099 717250 717250 Conference income 900099 308264 308264 1025514 96230 96230 0 239729 30253 -30253 -30253 6951282 1025514 0 65977 1830984 1830984 605753 605753 650728 432794 88012 129922 1139189 767932 147501 223756 9716 5958 1637 2121 80564 49400 13575 17589 125356 87741 12666 24949 40459 21993 12695 5771 4447 4447 16300 16300 4207 4207 103429 42490 53968 6971 773265 719561 37461 16243 155512 34848 58815 61849 58344 26323 19634 12387 592724 519886 19934 52904 16144 16144 Bank and credit card fe 54269 54269 Professional developmen 7642 3698 1994 1950 Dues and subscriptions 5427 2240 2027 1160 Miscellaneous 666 666 6275125 5151601 565952 557572 550112 874850 468613 1063290 6438 17250 255729 171717 2778614 2639462 57320 24857 4116826 4791426 333967 72839 311876 109810 74205 58103 25354 501880 484274 X 934379 1332082 2680567 2975070 3614946 4307152 4116826 4791426 676157 16049 0 X X 0 1 X 1 0 X 2419359 2110797 3415910 3083219 5859791 16889076 2419359 2110797 3415910 3083219 5859791 16889076 3156925 13732151 56917 68653 70303 73728 96230 365831 17254907 4254058 0.79580 0.81690 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 Lease liability 25354 25354 7122355 16049 128978 145027 6977328 4207 -30253 -26046 6951282 6430149 128978 30253 159231 6270918 4207 4207 6275125 Part XI, Line 4b - Other Adjustments: Fundraising Expenses -30,253. Part XII, Line 2d - Other Adjustments: Fundraising Expenses 30,253. 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 538803 North America - Canada and Mexico, but not the United States 0 0 Research grants to recipients in the region Research Grants 16950 0 0 0 0 0 0 605753 0 605753 North America - Canada and Mexico, but not the United States Research grants to recipients in the region 16950 Transfer 0 Europe (Including Iceland & Greenland) - Albania, Andorra, Austria, Belgium Research grants to recipients in the region 96000 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 217804 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 25000 Transfer 0 East Asia and the Pacific - Australia, Brunei, Burma, Cambodia, 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) 50000 0 9 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 239729 239729 13428 1402 15423 239729 239729 13428 1402 15423 30253 -30253 1 Indiana University- Purdue PO Box 78000 Dept 78920 Detroit MI 48278 356001673 501c3 70994 0 Research Baylor College of Medicine One Baylor Plaza Houston TX 77030 741613878 501c3 50000 0 Research Columbia University New York 615 West 131st St 3rd Fl New York NY 10027 135598093 501c3 151250 0 Research Oakland University 2200 N Squirrel Rd Rochester MI 48309 381714400 501c3 50000 0 Research Emory University PO Box 935084 Atlanta GA 31193 580566256 501c3 55800 0 Research Houston Methodist Research Institute PO Box 4805 Houston TX 77210 760094743 501c3 10600 0 Research Johns Hopkins University Department of Neurology 1101 E 33rd St Ste B001 Baltimore MD 21218 520595110 501c3 50900 0 Research Massachusetts General Hospital 125 Nashua St Suite 540 Boston MA 02114 041564655 501c3 66765 0 Research Northwestern University 633 Clark St Evanston IL 60208 362167817 501c3 13300 0 Research Regents of the University of Colorado Boulder 1800 Grant Street Suite 200 Denver CO 80203 846000555 501c3 50000 0 Research Regents of the University of California Los Angeles 635 Charles E Young Dr S Los Angeles CA 90095 956006143 501c3 68100 0 Research Regents of the University of Michigan 5082 Wolvertine Tower Ann Arbor MI 48109 386006309 501c3 190113 0 Research The University of Chicago 6054 South Drexel Avenue Chicago IL 60637 362177139 501c3 51700 0 Research Regents of the University of MN PO Box1450 Minneapolis MN 55485 416007513 501c3 221524 0 Research University of California San Francisco 550 16th St Floor 4 San Francisco CA 94143 946036493 501c3 24400 0 Research University of Florida Department of Neurology PO Box 100158 Gainesville FL 32611 596002052 501c3 62851 0 Research University of South Florida 4202 E Folwer Ave SVC 1039 Tampa FL 33620 593102112 501c3 128795 0 Research University of Texas Southwestern 5323 Harry Hines Blvd Dallas TX 75390 756002868 501c3 63400 0 Research University of Pennsylvania Franklin Building 5th floor 3451 Walnut Street Philadelphia PA 19104 231352685 501c3 48950 0 Research University of WashingtonUPIC 4300 Roosevelt Way NE Box 354965 Seattle WA 98105 916001537 501c3 34400 0 Research University of Cornell 1300 York Avenue New York NY 10065 131623978 501c3 50000 0 Research University of Chicago Medical Center 5841 South Maryland Avenue MC 1086 Chicago IL 60637 363488183 501c3 107393 0 Research Greenwood Genetic Center Inc 101 Gregor Mendel Circle Greenwood SC 29646 570604070 501c3 50400 0 Research 23 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. 1 X 0 0 0 0 0 0 0 0 0 Andrew Rosen Chief Executive Officer 195170 0 0 0 0 0 29719 0 11830 0 236719 0 0 0 Lauren Moore VP and Chief Scientific Of 198996 0 0 0 0 0 19994 0 6016 0 225006 0 0 0 Joel Sutherland Vice President Of Development 160306 0 0 0 0 0 21003 0 7695 0 189004 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.