2023-09-27T13:10:47-04:00 2022-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990 2022-01-01 473108868 Treatments for Epilepsy and Symptoms of TREA 655 Oak Grove Avenue STE 53 Menlo Park CA 94026 Kimberly Nye President 6505212279 2023-09-27 false Kimberly Nye John Mullins P01429307 2027706371 2023-09-28 0 00 AAL1 IAL1 2022 2023-04-26 12:10:37Z cont SLC13A5 Foundation Kimberly Nye 610734 false X TESSRESEARCH.ORG X 2015 CA Tess Research Foundations goal is to find better treatment options for SLC13A5 deficiency, (Continued on Sch O) 8 8 3 30 0 0 381268 610734 0 0 0 381268 610734 245038 527168 0 109417 219879 0 62718 112367 121304 466822 868351 -85554 -257617 717894 447207 18273 5203 699621 442004 Tess Research Foundations goal is to find better treatment options for SLC13A5 deficiency, (Continued on Sch O) false false 633004 521118 Funding Scientific Research - We continued our in-person, digital and remote natural history studies for SLC13A5with Citizen Corporation, Brown University, UT Southwestern, and Stanford University. These studies are key for our clinical trial readiness. We also funded basic and translational research in the US and Europe. 83910 1050 Education, Family Support and Awareness - We helped more families find an early and accurate diagnosis. Wepublished in peer reviewed journals, held monthly family support groups, and funded key research to better understand the disease, and we have our first gene therapy drug in development. 48165 5000 Conference - We continue to create a patient-centered network of doctors, researchers, clinicians and families. We hosted an International Research Roundtable and a Clinical Research Conference. We attended professionalconferences in the epilepsy and rare disease space. We remain the only organization in the world solely dedicated to this disorder. 765079 true true false false false false false false false false false false false false false false false false false false true true false false false false false true false false false false false false false false false false false false false false false false false false false true 6 0 true 3 true false false false false false false false false false false false false X 8 8 true false false false false false false true true false false true true true true true true false false false CA X Kimberly Nye 6503808054 655 Oak Grove Ave 53 Menlo Park CA 94026 X Adam Alberti Director 2.00 0.00 X 0 0 0 Lee Scheuer Director 3.00 0.00 X 0 0 0 Robert Wassman Director 3.00 0.00 X 0 0 0 Courtney Alberti Director 2.00 0.00 X 0 0 0 Paula Gani Secretary 5.00 0.00 X X 0 0 0 Kimberly Nye President 40.00 0.00 X X 0 0 0 Kevin McDonnell Treasurer 3.00 0.00 X X 0 0 0 Amber Black Vice Chair 5.00 0.00 X X 0 0 0 0 0 0 0 false false false 15000 595734 610734 610734 0 0 0 336274 336274 190894 190894 202645 152361 14034 36250 17234 13041 1286 2907 4242 4242 14852 10156 3096 1600 1141 826 48 267 5822 3091 1632 1099 12711 10019 2182 510 13027 800 12227 5880 5036 844 42188 42188 1537 1537 Other 19904 393 270 19241 868351 765079 40554 62718 691851 424997 24180 20347 1863 1863 717894 447207 18273 5203 18273 5203 X 699621 442004 699621 442004 717894 447207 -257617 0 X false false false X 286889 392669 675901 381268 610734 2347461 286889 392669 675901 381268 610734 2347461 481799 1865662 2347461 0.79480 0.76390 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED true Europe including Iceland and Greenland Program services Research 141992 North America Not the United States Program services Research 25000 South America Program services Research 23902 190894 190894 South America Research 23902 North America Not the United States Research 25000 Europe including Iceland and Greenland Research 24960 Europe including Iceland and Greenland Research 112032 Europe including Iceland and Greenland Research 5000 false false false false false false true Stanford University 450 Serra Mall Stanford CA 94305 941156365 501c3 136224 SLC13A5 Natural History Study Icahn School of Medicine at Mount S 1 Gustave L Levy Pl New York NY 10029 136171197 501c3 50000 Modulation of NaCT Function for the Trea Laxai Avanti Life Sciences Inc 4010 Moorpark Ave Suite 226 San Jose CA 95117 451360254 14800 Compound synthesis Texas Tech University Health Scienc 3601 4th Street Lubbock TX 79430 752668014 501c3 25000 Development of correctors to rescue muta UC Regents 1111 Franklin Street Oakland CA 94607 943067788 501c3 100000 New research tool for the SLC13A5 commun Uplifting Athletes 8 Atkinson Drive Doylestown PA 18901 341986485 501c3 10000 Matching Grant for SLC13A5 Research 5 1 Officer directors etc family relationship Part VI line 2 Courtney Lodato Alberti and Adam Alberti are married. Kimberly Nye and Courtney Lodato Alberti are sisters. Form 990 governing body review Part VI line 11 The 990 is presented to the board for review and approval. Conflict of interest policy compliance Part VI line 12c Each year the board complete the conflict of interest questionnaire, if there is a conflict of interest, they recuse themselves from voting. Other officer or key employee compensation Part VI line 15b Tess Research Foundations officers are all volunteers. Form 990 availability to public Part VI line 18 A copy of Form 990 is provided upon request. Governing documents etc available to public Part VI line 19 Governing documents, conflict of interest policy and financial statements are provided upon request. General explanation attachment Continuation of Mission Statement:a severe form of epilepsy beginning in infancy. SLC13A5 deficiency is a newly discovered, rare disease. Tess Research Foundation funds medical research, connects doctors and patients to researchers, and raises awareness and provides support and education to affected families through a website, emails, and an online support group.