2024-10-02T20:18:53-04:00 2023-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990 2023-01-01 812216511 Tatton Brown Rahman Syndrome Community Inc TATT 122 Hunns Lake Road Stanfordville NY 12581 Jill Kiernan Executive Direc 8452643016 2024-10-02 true true John Mullins P01429307 2027706371 2024-10-02 2023 2024-10-15 13:58:12Z Jill Kiernan 309002 false X www.tbrsyndrome.org X 2017 NY TBRS Community aims to support all families affected by TBRS and advance research toward interventions. 5 5 2 30 0 0 163592 279571 12938 16493 1768 0 165360 309002 10000 20000 0 105841 151602 0 20649 41246 162142 157087 333744 8273 -24742 832865 868444 8658 68979 824207 799465 TBRS Community aims to support all families affected by TBRS and advance research toward interventions. false false 291002 20000 12938 1. In 2023, our science team drove efforts toward identifying innovative treatments for TBRS. We completed a research gap analysis, recruited 10 new TBRS researchers, and hosted three Research Roundtables. These strides in our science program underscore our commitment to transforming research into actionable solutions, directly benefiting patients and their families.2. The highlight of the year was the TBRS Summit, a scientific and family conference, that united 187 patients and family members with 27 scientists. It was held at an Ultra-Accessible venue that offered inclusive activities for our attendees with disabilities.3. We funded critical research aimed at refining TBRS diagnosis and identifying key biomarkers essential for treatment development. We launched the TBRS Biorepository, with 32 patient and 10 control samples collected, this resource has become a vital tool for researchers worldwide, enabling them to fast-track their studies on TBRS. 291002 true true false false false 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 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 5 5 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 73433 0 2185 Jennifer York Isaacs Secretary 5.00 0.00 X X 0 0 0 Thomas Watson Treasurer 5.00 0.00 X 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 73433 0 2185 0 false false false 279571 279571 Meetings 900099 12938 12938 12938 16493 16493 309002 12938 0 16493 20000 20000 73433 64285 5015 4133 58800 51474 4017 3309 2347 2055 160 132 5853 5124 400 329 11169 9778 762 629 1700 1487 98 115 27819 24332 1602 1885 3908 3662 246 6065 1045 2666 2354 13160 9211 2019 1930 20336 20336 78402 72569 5833 5108 5108 Bio Repository 5644 5644 333744 291002 22093 20649 627616 844432 205249 24012 832865 868444 68979 8658 8658 68979 X 364731 645133 459476 154332 824207 799465 832865 868444 -24742 0 X true X false true false X 44255 97657 311233 163592 279571 896308 44255 97657 311233 163592 279571 896308 39843 856465 16493 16493 1768 1768 914569 0.93650 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED true Uplifting Athletes 8 Atkinson Drive Doylestown PA 18901 341986485 501c3 20000 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.