2025-02-08T10:48:54-07:00 2024-03-31 990 2023-04-01 465662435 SNYDER-ROBINSON FOUNDATION SNYD 7032030215 1443 Layman Street McLean VA 22101 Michael Raymond Executive Director 7032030215 2025-01-18 1 2023 2025-03-06 01:10:19Z Michael Raymond 1443 Layman St McLean VA 22101 28210 0 X https://snyder-robinson.org/ X 2014 VA We are a rare disease patient advocacy organization. Our mission is to support medical research that will lead to safe and effective treatments for individuals with Snyder-Robinson Syndrome and related disorders; and for related scientific and charitable purposes. 5 5 2 13 0 0 58730 28210 0 0 0 0 0 0 58730 28210 0 0 0 0 82408 131215 0 0 227 134844 40774 217252 171989 -158522 -143779 158268 14489 0 0 158268 14489 We are a rare disease patient advocacy organization. Our mission is to support medical research that will lead to safe and effective treatments for individuals with Snyder-Robinson Syndrome ("SRS") and related disorders; and for related scientific and charitable purposes. 0 0 122351 0 0 Snyder-Robinson Syndrome Patient Registry and Natural History Study (ongoing): This IRB-approved study gathers medical data from SRS patients to help researchers to understand SRS and to develop treatments for SRS. This includes salary expense for our Director of Research and related expenses. This line also includes related expenses incurred to find treatments for SRS patients. 45095 0 0 Education/Website: We incurred expenses to maintain a website and create digital content to share information about SRS, including information for health care providers. This includes payroll expense for our Director of Membership. Our website may be found at www.snyder-robinson.org. 0 0 0 N/A 0 0 0 167446 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 2 0 1 2 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 X 5 5 1 0 0 0 1 1 1 1 1 0 0 0 1 1 1 1 1 0 1 0 X Michael Raymond 7032030215 1443 Layman Street McLean VA 22101 Teri Koerner Director of Research 40 0 X X X 81260 0 81260 Cameron Hancock Director of Business Development & Membership 20 0 X X 40630 0 40630 Michael Raymond Executive Director 1 0 X X 0 0 0 Katia Luedtke General Counsel 1 0 X 0 0 0 Frank Marchetti Chief Financial Officer 1 0 X 0 0 0 Christopher Abbott Chief Information Officer 1 0 X 0 0 0 121890 0 121890 0 0 1 0 0 0 0 0 0 0 28210 0 28210 0 0 0 0 0 0 0 28210 0 0 0 121890 121890 0 0 9325 9325 227 227 1456 1456 Form 990 late filing penalty 1380 0 1380 0 Bank Fees 81 0 81 0 Payroll & Related Services 2855 0 2855 0 Natural History Study & Research Exps 34775 34775 0 0 171989 167446 4316 227 158268 14489 158268 14489 0 0 X 158268 14489 0 0 158268 14489 158268 14489 -143779 0 0 0 0 0 X 0 0 0 X 243145 270812 193587 58730 28210 794484 0 0 0 0 0 0 243145 270812 193587 58730 28210 794484 3200 7000 8000 5500 3000 26700 3200 7000 8000 5500 3000 26700 767784 10000 10000 243145 280812 193587 58730 28210 804484 0.95438 0.95590 0 0 X Schedule A, Part III, Line 12 The 10,000 was for an Employee Retention Tax Credit. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 0 0 0 0 0 0 Teri Koerner Director of Research 81260 0 0 0 0 0 0 0 0 0 81260 0 0 Cameron Hancock Director of Business Development & Membership 40630 0 0 0 0 0 0 0 0 0 40630 0 0 Form 990, Part VI, Section A, Line 2 Michael Raymond, Executive Director, and Katia Luedtke, General Counsel, are married. Both individuals are volunteers. Neither individual receives any compensation from the Foundation. Form 990, Part VI, Section A, Line 6 The Snyder-Robinson Foundation is a membership organization. We have no membership fees or dues. All individuals with Snyder-Robinson Syndrome, their parents, siblings, and legal guardians are voting members. Carriers of the genetic mutation that causes Snyder-Robinson Syndrome are also voting members. Non-voting members include any individuals who support the mission on the Foundation. Form 990, Part VI, Section A, Line 7a The Snyder-Robinson Foundation is a membership organization. We have no membership fees or dues. All individuals with Snyder-Robinson Syndrome, their parents, siblings, and legal guardians are voting members who may vote on the Foundation's officers and directors. Form 990, Part VI, Section A, Line 7b The Snyder-Robinson Foundation is a membership organization. We have no membership fees or dues. All individuals with Snyder-Robinson Syndrome, their parents, siblings, and legal guardians are voting members who can vote on any changes to the Foundations Articles of Incorporation and Bylaws. Form 990, Part VI, Section B, Line 11b The 990 is prepared by the Executive Director and reviewed by the CFO. Both individuals are volunteers who receive no compensation from the Foundation. Form 990, Part VI, Section B, Line 12c The company had a very limited number of transactions during the year. All of these transactions were routine arm's length transactions with unrelated third parties. Form 990, Part VI, Section B, Line 15 The Foundation's Executive Director is a volunteer and received no compensation. The Foundation had two employees during the year. Their salaries were funded by a prior year grant from the Rare As One grant program administered by the Chan Zuckerberg Initiative. Proposed salaries were submitted with the grant application after reviewing comparable salaries for similar positions in the local market. Form 990, Part VI, Section C, Line 19 Our governing documents and policies are posted to our website at: www.snyder-robinson.org N/A.