2024-08-20T14:07:38-04:00 2023-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990 2023-01-01 473108868 Treatments for Epilepsy and Symptoms of TREA 430 Claremont Way Menlo Park CA 94025 Kimberly Nye Chair & Executi 6505212279 2024-08-19 true true John Mullins P01429307 2027706371 2024-08-20 2023 2024-08-08 14:25:15Z X cont SLC13A5 Foundation Kimberly Nye 539856 false X TESSRESEARCH.ORG X 2015 CA Tess Research Foundations goal is to find better treatment options for SLC13A5 deficiency, (Continued on Sch O) 9 9 3 50 0 0 610734 433322 0 0 70325 610734 503647 527168 152845 0 219879 277164 0 48269 121304 67678 868351 497687 -257617 5960 447207 459776 5203 11812 442004 447964 Tess Research Foundations goal is to find better treatment options for SLC13A5 deficiency, (Continued on Sch O) false false 302455 152331 Funding Scientific Research - We continued our in-person, digital and remote natural history studies for SLC13A5 with Ciitizen Corporation, Brown University, UT Southwestern, and Stanford University. These studies are key for our clinical trial readiness. We also funded basic and translational research. 117833 Education, Family Support and Awareness - We are the only organization dedicated to supporting families with SLC13A5 Epilepsy and raising awareness about the disease. Our ongoing program includes sharing updates about the latest research findings and connecting and empowering families so they can share their experiences and support one another. We have an annual awareness day (May 13), host monthly virtual support calls, maintain a website, and send a monthly electronic newsletter. 8772 514 Conference - We continue to create a patient-centered network of doctors, researchers, clinicians, and families. We attend neurology, epilepsy, and drug development conferences and host research roundtables to build partnerships and share current research. 429060 true true false false false false false false false false false false false false false false false false false false false false false false true false false true false false false false false false false false false false false false false false false false false false false true 7 0 true 3 true false false false false false false false false false false false false X 9 9 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 430 Claremont Way Menlo Park CA 94025 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 Kimberly Nye Chair & Executive Director 40.00 0.00 X X 0 0 0 Michael Black Vice Chair as of 51 5.00 0.00 X X 0 0 0 Paula Gani Secretary 5.00 0.00 X X 0 0 0 Kevin McDonnell Treasurer 3.00 0.00 X X 0 0 0 Amber Black Vice Chair until 430 5.00 0.00 X X 0 0 0 0 0 0 0 false false false 102853 330469 433322 104895 102853 36209 68686 68686 Other Income 900099 1639 1639 1639 503647 1639 0 68686 152845 152845 253102 208836 3976 40290 4842 4842 155 112 43 19065 15469 409 3187 4992 4992 12074 11324 750 4859 3305 1554 9444 4390 3941 1113 4312 4312 20212 20212 6715 6715 761 761 Other 4309 1010 370 2929 497687 429060 20358 48269 424997 390098 20347 67815 1863 1863 447207 459776 5203 11812 5203 11812 X 442004 447964 442004 447964 447207 459776 5960 0 X false false false X 392669 675901 381268 610734 433322 2493894 392669 675901 381268 610734 433322 2493894 394719 2099175 1639 1639 2495533 0.84120 0.79480 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Derby Day 207748 102853 104895 10572 4078 2074 19485 207748 102853 104895 10572 4078 2074 19485 36209 68686 true Stanford University 450 Serra Mall Stanford CA 94305 941156365 501c3 139654 SLC13A5 Natural History Study The Jackson Laboratory 600 Main Street Bar Harbor ME 04609 010211513 501c3 12677 Research 2 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.