2026-03-10T11:28:30-07:00 2025-12-31 990 2025-01-01 043673104 PHELAN MCDERMID SYNDROME FOUNDATION PHEL 9414858000 8 Sorrento Drive Osprey FL 34229 Priscilla Hackstadt Chief Financial Officer 7703109572 2026-03-06 2025 2025-03-06 01:10:19Z Priscilla Hackstadt 8 Sorrento Drive Osprey FL 34229 1245861 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 12 50 0 0 1084905 1060585 67727 14143 44888 96976 109364 74157 1306884 1245861 326392 105000 0 0 574741 608197 0 0 198735 536431 369177 1437564 1082374 -130680 163487 2109869 2220653 210527 154468 1899342 2066185 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 192052 0 0 CONNECT (Family Support): The Organization (PMSF) connects with families from diagnosis throughout their life journey, providing essential support, knowledge, and skills to navigate the complexities of Phelan Mc-Dermid syndrome. In 2025, PMSF provided 2,400 connections through comprehensive support services, welcoming 300 new families into membership. Key initiatives included supporting 133 newly diagnosed families via the "First 100 Days" program, educating 250 caregivers and professionals through the "Pathways" video series, and facilitating 48 Caregiver Support Group sessions for 250 participants. These programs integrate mental health, social, and emotional well-being, while regional and international gatherings further empower our community to thrive. 168860 0 0 CARE (Improving Medical Care): The Organization (PMSF) ensures that individuals with Phelan-McDermid syndrome have access to a robust community of specialists and evidence-based care. We bridge the gap between research and clinical practice by educating professionals, facilitating medical consultation, and expanding our specialized clinical infrastructure. In 2025, we strengthened this ecosystem by establishing our first 11 Phelan-McDermid Syndrome Clinics-including a new multidisciplinary center at Cincinnati Children's Hospital Medical Center-and launched initiatives to grow our Healthcare Provider (HCP) network. Our experts facilitated 22 neuropsychiatric consultation cases, 15 neuropsychiatric referrals, and 50 genetic counseling referrals. Additionally, we served as a primary medical hub, recording over 100,000 views on pmsf.org and overseeing 3,500 downloads of clinical and educational resource documents. 348155 100000 14143 CURE (Driving Research Breakthroughs): The Organization (PMSF) accelerates scientific discovery by centering the patient experience in research, expanding our clinical data infrastructure, and providing critical funding. In 2025, our grant committee awarded the Shannon O'Boyle Memorial Grant to Dr. Jonathan Santoro (Children's Hospital of Los Angeles) to advance vital neuropsychiatric biomarker research. We expanded the PMSF DataHub to 1,500 consented participants and 1,400 curated genetic reports, creating an invaluable resource for pharmaceutical and clinical partners. Furthermore, we directly facilitated participation in the Developmental Synaptopathies Consortium natural history study by providing travel reimbursements to 24 families. Our commitment to global knowledge-sharing was underscored by the PMSF podcast, which experienced 500% growth and reached audiences in 30 countries. 0 0 0 709067 1 1 0 1 0 0 0 0 0 0 0 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 12 0 1 12 1 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 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 Diane Linnehan Chief Operating Officer/Co-interim CEO 40 X X 117089 0 3327 Lauren Schmitt Chief Science Officer 40 X X 108138 0 3228 Shira Johnson Chief Development Officer/Co-Interim CEO 40 X 54382 0 1631 Priscilla Hackstadt Chief Financial Officer 16 X 48022 0 1402 Rhonda Blumenthal Chief Executive Officer 40 X 30446 0 913 Denise Croden President 5 X X 0 0 0 Ben Holocher Vice President 5 X X 0 0 0 Lisa Brown Secretary 5 X X 0 0 0 Michael Cento Treasurer 5 X X 0 0 0 Catherine Valcourt-Pearce Director 2 X 0 0 0 Rebecca Buchanan Director 2 X 0 0 0 Eden Rivera Director 2 X 0 0 0 Dr Lori Levi Director 2 X 0 0 0 Heidi Grabenstatter PhD Director 2 X 0 0 0 358077 0 10501 2 0 0 0 0 0 0 29882 0 110632 920071 0 1060585 Travel reimbursement program 813212 14143 14143 0 0 0 0 0 0 14143 96976 96976 0 0 0 0 0 0 0 0 0 0 0 0 0 0 73622 29882 0 73622 0 73622 535 535 0 0 535 1245861 111654 0 73622 X 100000 100000 0 0 5000 5000 0 0 351129 236613 67007 47509 0 0 0 0 199809 146120 31930 21759 12884 8166 2988 1730 542 0 542 0 43833 29407 8994 5432 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 213985 112150 23831 78004 7618 641 0 6977 32076 3237 7996 20843 42934 21883 15617 5434 0 0 0 0 8100 0 8100 0 40204 40204 0 0 0 0 0 0 4379 4299 0 80 0 0 0 0 0 0 0 0 0 0 0 0 7769 202 7567 0 12112 1145 10967 1082374 709067 174572 198735 1452626 212923 1548970 73450 14250 12720 43366 0 571073 401144 2109869 2220653 19270 37256 190696 100000 561 17212 210527 154468 X 1894920 2062385 4422 3800 1899342 2066185 2109869 2220653 163487 3356 0 0 0 0 X 0 1 1 0 X 758981 744192 834914 1084905 1060585 4483577 758981 744192 834914 1084905 1060585 4483577 434662 4048915 123 -8775 14095 44888 96976 147307 137898 118231 213752 177091 74157 721129 5352013 0.75652 0.72417 X Schedule A, Part II, Line 10 Net income from fundraising events and program income from agreements, contracts, and family conference. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 709067 709067 131360 32840 0 0 87861 146139 185833 131360 551193 826790 0 0 0 0 0 21990 36535 46458 32840 137823 206735 0 0 0 0 0 1249217 3356 0 0 0 3356 1245861 0 0 0 1245861 1082374 0 0 0 0 0 1082374 0 0 0 1082374 Phelan Lucky 102026 29882 72144 0 0 0 0 0 0 0 0 102026 29882 72144 0 0 0 0 0 0 0 72144 1 Children's Hospital of Los Angeles 4650 W Sunset Blvd Los Angeles CA 90027 951690977 501(c)(3) 100000 0 To identify diagnostic biomarkers in up to 30 individuals with Phelan-McDermid syndrome who present with neuropsychiatric disease. To determine whether these individuals exhibit distinct cytokine, proteomic, and metabolomic profiles in the serum and cerebrospinal fluid indicative of systemic and/or central inflammation. To evaluate markers of cortical and white matter disruption using magnetic resonance imaging and electroencephalography. 1 0 Schedule I, Part I, Line 2 The organization has a chief science officer and scientific advisory committee that review all grant requests and grant contract awards. The deliverables and expectations set forth in the executed awards may vary accoding to the size and circumstances of the grant contract. All funds must be used for the benefit or programs that support individuals with Phelan-McDermid syndrome and their families. 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, key volunteers and all 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 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. Form 990, Part IX, Line 11g Program fees include executive search services, genetic curation and counseling, neuropsychiatric counseling, and caregiver support services. Administrative fees include executive search services, audit fees, and fees for preparation of amended forms 941 for 3rd qtr 2020 through 3rd qtr 2021 to claim employee retention tax credits. Fundraising fees include executive search services and fees paid to fundraising/cultivation experts to craft various critical campaigns/appeals.