2024-03-01T13:11:16-07:00 2023-12-31 990 2023-01-01 043673104 PHELAN MCDERMID SYNDROME FOUNDATION PHEL 9414858000 8 Sorrento Drive Osprey FL 34229 Rhonda Blumenthal Chief Executive Officer 7703109572 2024-03-01 Rhonda Blumenthal 999009999 1 1 11 1 AAL2 X 2023 2023-04-26 12:10:37Z Rhonda Blumenthal 8 Sorrento Drive Osprey FL 34229 1067265 0 X pmsf.org X 2002 FL The mission of the Phelan-McDermid Syndrome Foundation is to make today better and the future brighter for everyone living with Phelan-McDermid syndrome - from the moment of diagnosis to the delivery of treatments and cures. 8 8 11 50 0 0 744192 834914 34615 110073 -8775 14095 83616 103679 853648 1062761 20900 222500 0 0 448440 521790 0 0 126130 245923 354529 715263 1098819 138385 -36058 2113920 2243009 59480 216181 2054440 2026828 The mission of the Phelan-McDermid Syndrome Foundation is to make today better and the future brighter for everyone living with Phelan-McDermid syndrome - from the moment of diagnosis to the delivery of treatments and cures. 0 0 575637 220000 110073 RESEARCH SUPPORT: The Phelan-McDermid Syndrome Foundation (PMSF) works closely with researchers, pharmacological companies, biotechnology, academic institutions, and other external scientists with the ultimate goal of finding effective treatments for Phelan-McDermid syndrome (PMS). The PMSF contributes to research by breaking down barriers to patient participation. The PMSF provides information about and access to research opportunities as well as offers financial assistance for travel costs to certain research sites. The PMSF also works with its international scientific advisory committee (SAC) to set strategic goals in research and science for the PMSF and to stay informed of international PMS projects and research. 231956 2500 0 FAMILY SUPPORT: The Phelan-McDermid Syndrome Foundation (PMSF) is the largest patient advocacy group (PAG) for Phelan-McDermid syndrome in the world. The PMSF was established to provide critical information and support to empower families affected by this rare condition. The PMSF and its entire community of families, researchers, clinicians, and friends share everything they know about Phelan-McDermid syndrome and provide connections to a global community. The PMSF has created a worldwide virtual and local community and receives daily contact from families, extended families, clinicians, and researchers through email, social media, phone, and other avenues. Every two years, families, researchers, clinicians, and others who support people with Phelan-McDermid syndrome come together at the International Family Conference to laugh, share and learn. In non-conference years, the PMSF strives to create a virtual or in-person regional conference. The PMSF Regional REPs coordinate periodic in-person gatherings to help families create connections, share stories and support each other. 0 0 0 807593 1 1 0 1 0 0 0 0 0 1 1 0 0 0 0 0 1 0 0 0 0 0 0 0 1 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 9 0 1 11 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 X 8 8 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AK AL AR CA CO CT FL GA IL KS KY MA MD ME MI MN MO MS NC ND NH NJ NM NV NY OH OK OR PA RI SC TN UT VA WA WI WV X X Priscilla Hackstadt 9414858000 8 Sorrento Drive Osprey FL 34229 Rhonda Blumenthal Chief Executive Officer 40 X X 116269 0 3488 Denise Croden President 5 X X 0 0 0 Lisa Brown Vice President 5 X X 0 0 0 Heidi Grabenstatter Secretary 5 X X 0 0 0 Chris Jauch Treasurer 5 X X 0 0 0 Catherine Valcourt-Pearce Director 5 X 0 0 0 Mike Fraunces Director 5 X 0 0 0 Eden Rivera Director 5 X 0 0 0 Alycia Halladay Director 5 X 0 0 0 116269 0 3488 1 0 0 0 0 0 0 30060 0 4590 800264 0 834914 Travel program reimbursement fees 813212 110073 110073 0 0 0 0 0 0 110073 14095 14095 0 0 0 0 0 0 0 0 0 0 0 0 0 0 108183 30060 4504 103679 0 103679 0 1062761 124168 0 103679 220000 220000 2500 2500 116600 69960 34980 11660 355419 223284 65902 66233 11153 6617 3041 1495 734 734 37884 24154 7753 5977 86803 66001 12335 8467 5597 1321 4276 29679 3717 8082 17880 50608 34387 6914 9307 7500 7500 159919 150613 9013 293 6336 4539 1615 182 6585 0 6585 1502 500 642 360 1098819 807593 165096 126130 1550551 1610427 5520 3937 59184 13017 13017 0 0 559432 567878 2113920 2243009 48845 60620 155000 10635 561 59480 216181 X 2054440 2025504 0 1324 2054440 2026828 2113920 2243009 -36058 8446 0 0 0 0 X 0 1 1 0 X 477942 471225 758981 744192 834914 3287254 477942 471225 758981 744192 834914 3287254 472115 2815139 6163 886 123 -8775 14095 12492 172279 88089 137898 118231 213752 730249 4029995 0.69855 0.74484 X Schedule A, Part II, Line 10 Net income from fundraising events and program income from agreements and contracts RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 807593 807593 146139 36535 0 0 45752 50817 87861 146139 330569 495854 0 0 0 0 0 11438 12704 21990 36535 82667 124001 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 37367 0 -1592 35693 0 82 0 32588 0 6339 1384 0 176 37367 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 13017 0 13017 0 0 0 0 0 0 1075711 8446 0 0 0 8446 1067265 0 -4504 -4504 1062761 1103323 0 0 0 0 0 1103323 0 -4504 -4504 1098819 Schedule D, Part V, Line 4 The organization is using the quasi-endowment funds liquidated in 2020 in specific program initiatives. Schedule D, Part XI, Line 4b Fundraising event expenses netted against event revenue Schedule D, Part XII, Line 4b Fundraising event expenses netted against event revenue Phelan Lucky 138243 30060 108183 0 0 0 0 0 4504 0 0 138243 30060 108183 0 0 0 0 0 4504 4504 103679 1 Clemson University Foundation 230 Kappa Street Clemson SC 29634 570426335 55000 To study the response of cells from individuals with Phelan-McDermid syndrome to candidate therapeutics/treatments (such as Insulin-like Growth Factor 1 and human growth hormone) and identify subgroups in the Phelan-McDermid syndrome population that will potentially respond better or worse to the selected compounds. Children's Hospital Corporation DBA Boston Children's Hospital 300 Longwood Avenue Boston MA 02115 042774441 501(c)(3) 100000 To understand whether people with Phelan-McDermid syndrome, particularly those with severe neuropsychiatric illness (SNPI) -- have underlying differences in their immune system that might guide treatment. University of Miami 1320 S Dixie Highway Ste 650 Coral Gables FL 33146 590624458 501(c)(3) 55000 To develop an alternative objective measure of Gastrointestinal motility (GI transit) in individuals with Phelan-McDermid syndrome. Muffins with blue dye will be ingested by individuals with Phelan-McDermid syndrome and caregivers will use a mobile app to track and report GI transit time. Autism Science Foundation 3 Continental Road Scarsdale NY 10583 264522309 501(c)(3) 10000 To model neuroinflammation and neuropsychiatric regression in profound autism. 4 0 Schedule I, Part I, Line 2 The organization verifies 501(c)(3) status with those it grants funding to and stipulates that the funds are to be used for the benefit or programs that support individuals with Phelan-McDermid syndrome and their families. also, the organization has a scientific director and scientific advisory committee that review all grant requests and grant contract awards. the deliverables and expectation set forth in the executed awards may vary according to the size and circumstances of the grant contract. Form 990, Part VI, Section B, Line 11b Form 990 and any required supplemental schedules are reviewed in draft form by the finance committee. Finance committee approves and recommends that the board accept the draft of the 990. Board members are provided a draft of the 990 and allowed one week to comment, request changes, and ask questions, after which time the 990 is filed electronically. Form 990, Part VI, Section B, Line 12c Board members, committee chairs, and other key volunteers and employees are required to sign an annual statement acknowledging they have received a written conflict of interest policy and are in compliance with the policy. Form 990, Part VI, Section B, Line 15 Board determines compensation of Chief Executive Officer as part of annual budgeting process for entire organization. Salary of CEO falls within range that would be considered reasonable, given comparability data of other similar organizations. Board president performs annual review of CEO. Note that independent review and approval as well as comparability data used is documented in board minutes whenever a salary change is made. CEO determines compensation of other key staff as part of annual budgeting process for entire organization. Salary of these staff fall within the range that would be considered reasonable given comparability data of other similar organizations. Form 990, Part VI, Section C, Line 19 The organization makes its audited financial statements and form 990s available on its website. Other documents are made available upon request.