2025-07-22T13:46:55-04:00 2024-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990 2024-01-01 812216511 Tatton Brown Rahman Syndrome Community Inc % Jill Kiernan TATT 8452643016 122 Hunns Lake Road Stanfordville NY 12581 JILL KIERNAN Executive Director 8452643016 2025-07-22 true true JOHN MULLINS P01429307 2027706371 2025-07-22 2024 2025-03-06 01:10:19Z Jill Kiernan 122 Hunns Lake Road Stanfordville NY 12581 270669 false X www.tbrsyndrome.org X 2017 NY TBRS Community aims to support all families affected by TBRS and advance research toward interventions. 7 7 2 15 0 0 279571 181535 12938 61008 16493 28126 0 309002 270669 20000 110000 0 151602 153039 0 59482 162142 136523 333744 399562 -24742 -128893 868444 691528 68979 20956 799465 670572 TBRS Community aims to support all families affected by TBRS and advance research toward interventions. false false 149692 110000 Research: TBRS-funded research led to potentially lifesaving clinical discoveries, improving monitoring for key health risks. Through our biorepository (45+ patient samples) and funded TBRS models, we removed barriers for scientists by providing essential tools for biomarker discovery and treatment development. These efforts have made it easier and faster for researchers to step into TBRS studies, expanding research participation and increasing treatment development potential. 116651 Collaborative Research Network: Over the past year, the TBRS Community expanded its Collaborative Research Network (CRN) by fostering cross-disciplinary partnerships, centralizing data, and prioritizing patient-driven research goals. We increased the TBRS Patient Registry to over 200 participants, making it a vital resource for scientific discovery. Additionally, we developed a strategic research roadmap to guide efforts toward clinical outcomes and ensure open access to data, accelerating the path toward effective treatments. 46147 61008 Education: In the past year, the TBRS Community delivered critical education and advocacy programs, including:Raising awareness of seizures, cardiac concerns, and cancer risks through scientific publications and advocacy efforts.Launching a Future Planning Series with expert-led sessions on long-term care, financial planning, and adult services, supporting families in making informed decisions.Hosting family education webinars, social groups, and parent support networks, strengthening community connections and equipping families with research and clinical insights. 312490 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 3 0 true 2 true false false false false false false false false false false false false X 7 7 false false false false false false false true false false false true true true false false false false false false NY X Tatton Brown Rahman Syndrome Commun 8452643016 122 Hunns Lake Road Stanfordville NY 12581 Jill Kiernan Executive Director 40.00 0.00 X 76650 0 2280 Robert Thibodeau Director 1.00 0.00 X 0 0 0 Zoe Wisnoski Director 1.00 0.00 X 0 0 0 Monic Bejano Director 1.00 0.00 X 0 0 0 Kacee Richter President 10.00 0.00 X X 0 0 0 Kerry Grens Vice President 5.00 0.00 X X 0 0 0 Erin Rooker Marketing Manager 5.00 0.00 X X 0 0 0 Thomas Watson Treasurer 5.00 0.00 X X 0 0 0 76650 0 2280 0 false false false 181535 181535 Conference 900099 61008 61008 61008 28126 28126 0 270669 61008 0 28126 X 10000 10000 100000 100000 76650 67819 4571 4260 57332 50726 3419 3187 2280 2017 136 127 5925 5243 353 329 10852 9602 647 603 9600 9600 69874 34914 34960 6536 4929 200 1407 9159 1300 5315 2544 8254 7941 216 97 9481 9143 338 12345 715 11630 3133 3133 Bio Repository 8141 8141 399562 312490 27590 59482 844432 688150 24012 3378 868444 691528 68979 20956 68979 20956 X 645133 667194 154332 3378 799465 670572 868444 691528 -128893 0 X true X false true false X 97657 311233 163592 279571 181535 1033588 97657 311233 163592 279571 181535 1033588 59916 973672 16493 28126 44619 1768 1768 1079975 0.90160 0.93650 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED true North America Not the United States Grant making Research Grant 100000 100000 100000 North America Not the United States Research Grant 50000 North America Not the United States Research Grant 50000 2 false false false false false false true Uplifting Athletes 8 Atkinson Drive Doylestown PA 18901 341986485 501c3 10000 1 Committee meeting documentation Part VI line 8b All committees are chaired by a Board Member who reports regularly at the Board meetings, disclosing discussions and suggestions for action. No committee currently can act without The Boards approval. Form 990 governing body review Part VI line 11 Annual tax returns are offered to each director for review and they are give 48 hours from receipt to suggest corrections or changes. Conflict of interest policy compliance Part VI line 12c The Organization has a conflict of interest policy which is reviewed by The Board and discussed at the annual meeting, any member with a conflict of interest submits it in a written format for presentation to The Board. Governing documents etc available to public Part VI line 19 Any tax or financial information must be requested from The Organization. The Organization will then respond with the information. List of other fees for services expenses Part IX line 11g Development: $34,960Scientific Advisor: $33,850Social Media Consultant: $1,064