2023-06-21T13:11:21-05:00 2022-12-31 411397419 Abdo LLP 5201 Eden Ave Ste 250 Edina MN 55436 990 2022-01-01 410832903 National Ataxia Foundation Incorporated NATI 7635530020 PO Box 27986 Minneapolis MN 55427 Andrew Rosen Executive Director 7635530020 2023-06-12 1 Andrew Rosen XXX-XX-XXXX 0 Steven D AnsethCPA P00552219 9528359090 2023-06-12 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z Andrew Rosen PO Box 27986 Minneapolis MN 55427 4595772 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. 13 13 17 350 0 0 2110797 3415895 712604 1109574 68653 70303 -24534 -14584 2867520 4581188 973478 1766662 0 0 1035987 1427841 15000 0 379035 561109 922102 2585574 4116605 281946 464583 4406293 5008595 246072 581978 4160221 4426617 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 583200 3071 309574 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. 1837520 1011330 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. 943904 752261 800000 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. 3364624 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 10 0 1 17 1 0 0 0 0 0 0 0 0 0 0 0 0 X 13 13 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 Samuel Kirton President 5.00 X X 0 0 0 Linda Snider Vice President 2.00 X X 0 0 0 Greg Rooks Treasurer 2.00 X X 0 0 0 John Mauro Secretary 2.00 X X 0 0 0 David Brunnert Board Member 2.00 X 0 0 0 Cindy DeMint Board Member 2.00 X 0 0 0 Michael Cammer Board Member 2.00 X 0 0 0 Jim Keene Board Member 2.00 X 0 0 0 Greg Klassen Board Member 2.00 X 0 0 0 Ann Riley Board Member 2.00 X 0 0 0 Denise Kolpack Board Member 2.00 X 0 0 0 John Dwyer Board Member 2.00 X 0 0 0 Serena Hung Board Member 2.00 X 0 0 0 Andrew Rosen Executive Director 40.00 X 160164 0 7994 Joel Sutherland Development Director 40.00 X 143825 0 8551 Lauren Moore Chief Scientific Officer 40.00 X 170785 0 6723 474774 0 23268 3 0 1 0 0 250641 3165254 9870 3415895 Drug Development Colla 900099 800000 800000 Conference income 900099 309574 309574 1109574 70303 70303 0 250641 14584 -14584 -14584 4581188 1109574 0 55719 1483310 1483310 3071 3071 280281 280281 498042 363678 40659 93705 697927 509638 56977 131312 145852 94976 20483 30393 86020 63122 6467 16431 80792 60423 6220 14149 10373 10373 13000 13000 66694 33842 32852 21013 1028 6831 13154 37552 3866 28405 5281 61739 61739 492015 441325 22921 27769 11737 11737 Dues and subscriptions 73105 10263 16917 45925 Bank and credit card fe 45415 5052 40363 Miscellaneous 5970 220 4834 916 Development 1139 156 983 1558 1558 4116605 3364624 372946 379035 1548448 1969164 1636501 1642051 31414 55331 65695 187070 1124235 1065945 0 89034 4406293 5008595 73572 470035 172500 22291 0 89652 246072 581978 X 2607446 2404811 1552775 2021806 4160221 4426617 4406293 5008595 464583 -194093 -4094 0 X 0 1 X 0 0 X 2275836 2593142 2419359 2110797 3415910 12815044 2275836 2593142 2419359 2110797 3415910 12815044 912123 11902921 57676 57239 56917 68653 70303 310788 13125832 3044957 0.90680 0.93750 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 Lease liability 89652 89652 4397585 -194093 -194093 4591678 4094 -14584 -10490 4581188 4131189 0 4131189 -14584 -14584 4116605 Part XI, Line 4b - Other Adjustments: Fundraising Expenses -14,584. Part XII, Line 4b - Other Adjustments: Fundraising Expenses -14,584. 1 Europe (Including Iceland & Greenland) - Albania, Andorra, Austria, Belgium 0 0 Research grants to recipients in the region Research Grants 200000 East Asia and the Pacific - Australia, Brunei, Burma, Cambodia, 0 0 Research grants to recipients in the region Research Grants 50000 North America 0 0 Research grants to recipients in the region Research Grants 30282 0 0 0 0 0 0 280282 0 280282 Europe (Including Iceland & Greenland) Research grants to recipients in the region 50000 Transfer 0 East Asia and the Pacific Research grants to recipients in the region 50000 Transfer 0 Europe (Including Iceland & Greenland) Research grants to recipients in the region 100000 Transfer 0 North America Research grants to recipients in the region 9700 Transfer 0 North America Research grants to recipients in the region 20582 Transfer 0 Europe (Including Iceland & Greenland) Research grants to recipients in the region 50000 Transfer 0 6 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. Part III Accounting Method: Walk n Roll 250641 250641 12136 2448 250641 250641 12136 2448 14584 -14584 1 Arizona State University 1151 S Forest Ave Tempe AZ 85281 860196696 501c3 50000 0 Research Baylor College of Medicine One Baylor Plaza Houston TX 77030 741613878 501c3 85000 0 Research Columbia University New York PO Box 29789 New York NY 10087 135598093 501c3 70100 0 Research Duke University Medical Center 324 Blackwell St Site 900 Durham NC 27701 231352685 501c3 75000 0 Research Emory University PO Box 935084 Atlanta GA 31193 580566256 501c3 25000 0 Research Houston Methodist Research Institute PO Box 4805 Houston TX 77210 760094743 501c3 51450 0 Research Johns Hopkins University Department of Neurology 1101 E 33rd St Ste B001 Baltimore MD 21218 520595110 501c3 49100 0 Research Massachusetts General Hospital 55 Fruit St Boston MA 02114 041564655 501c3 42500 0 Research Northwestern University 633 Clark St Evanston IL 60208 362167817 501c3 68000 0 Research Oregon Health & Science University 3181 SW Sam Jackson Park Rd Portland OR 97239 931176109 501c3 50000 0 Research Regents of the University of California Los Angeles 635 Charles E Young Dr S Los Angeles CA 90095 956006143 501c3 121500 0 Research Regents of the University of Michigan 5082 Wolvertine Tower Ann Arbor MI 48109 386006309 501c3 132450 0 Research The University of Chicago 6054 South Drexel Avenue Chicago IL 60637 362177139 501c3 32200 0 Research The University of Texas MD Anderson Cancer Center 1515 Holcombe Boulevard Houston TX 77030 746001118 501c3 50000 0 Research University of California San Francisco 550 16th St Floor 4 San Francisco CA 94143 946036493 501c3 42500 0 Research University of Florida Department of Neurology PO Box 100158 Gainesville FL 32611 596002052 501c3 184567 0 Research University of South Florida 12901 Bruce B Downs Blvd Tampa FL 33612 593102112 501c3 93903 0 Research University of Texas Southwestern 5323 Harry Hines Blvd Dallas TX 75390 752556007 501c3 44600 0 Research 18 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 Lauren Moore Chief Scientific Officer 170785 0 0 0 0 0 0 0 6723 0 177508 0 0 0 Andrew Rosen Executive Director 160164 0 0 0 0 0 0 0 7994 0 168158 0 0 0 Joel Sutherland Development Director 143825 0 0 0 0 0 0 0 8551 0 152376 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 Executive Director. 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 Executive Director'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 Executive Director annually evaluates the performance of employees in a written reported saved in each employee's permanent file. The Executive Director has a salary budget as set by the full Board of Directors. The Executive Director 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.