{"ein":"043673104","name":"PHELAN MCDERMID SYNDROME FOUNDATION","city":"OSPREY","state":"FL","ntee_code":"H80","subsection_code":"03","form_type":"990","totals":{"paid_usd":623980,"paid_count":10,"recipient_count":8,"approved_future_usd":0,"approved_future_count":0,"first_tax_year":2021,"last_tax_year":2025,"grant_rows":10},"years":[{"tax_year":2021,"amount_type":"paid","usd":11688,"count":1},{"tax_year":2022,"amount_type":"paid","usd":20900,"count":1},{"tax_year":2023,"amount_type":"paid","usd":220000,"count":4},{"tax_year":2024,"amount_type":"paid","usd":271392,"count":3},{"tax_year":2025,"amount_type":"paid","usd":100000,"count":1}],"top_recipients":[{"name":"Boston Children's Hospital Children's Hospital Corporation","ein":"042774441","tier":"A","confidence":1,"city":"Boston","state":"MA","paid_usd":216392,"count":2,"last_tax_year":2024},{"name":"Seaver Autism Center Icahn School of Medicine at Mount Sinai","ein":"136171197","tier":"A","confidence":1,"city":"New York","state":"NY","paid_usd":120900,"count":2,"last_tax_year":2024},{"name":"Children's Hospital of Los Angeles","ein":"951690977","tier":"A","confidence":1,"city":"Los Angeles","state":"CA","paid_usd":100000,"count":1,"last_tax_year":2025},{"name":"University of Miami","ein":"590624458","tier":"A","confidence":1,"city":"Coral Gables","state":"FL","paid_usd":55000,"count":1,"last_tax_year":2023},{"name":"Clemson University Foundation","ein":"570426335","tier":"A","confidence":1,"city":"Clemson","state":"SC","paid_usd":55000,"count":1,"last_tax_year":2023},{"name":"Northeastern University","ein":"041679980","tier":"A","confidence":1,"city":"Boston","state":"MA","paid_usd":55000,"count":1,"last_tax_year":2024},{"name":"Kyle's Angels","ein":"851554186","tier":"A","confidence":1,"city":"Saint Robert","state":"MO","paid_usd":11688,"count":1,"last_tax_year":2021},{"name":"Autism Science Foundation","ein":"264522309","tier":"A","confidence":1,"city":"Scarsdale","state":"NY","paid_usd":10000,"count":1,"last_tax_year":2023}],"recent_grants":[{"grant_id":"e4f6952ed84cfdb8c50e2eb3ed59c576","tax_year":2025,"amount_type":"paid","amount_usd":100000,"noncash_amount_usd":0,"recipient_name":"Children's Hospital of Los Angeles","recipient_ein":"951690977","match_tier":"A","match_confidence":1,"match_method":"reported_ein_in_bmf","purpose":"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.","city":"Los Angeles","state":"CA","recipient_type":"organization","object_id":"202630699349300018"},{"grant_id":"ef02c11c6adc40d12b0fc82325dee178","tax_year":2024,"amount_type":"paid","amount_usd":116392,"noncash_amount_usd":null,"recipient_name":"Boston Children's Hospital Children's Hospital Corporation","recipient_ein":"042774441","match_tier":"A","match_confidence":1,"match_method":"reported_ein_in_bmf","purpose":"To support the conclusion of the second phase of the Developmental Synaptopathies Consortium's Phelan-McDermid syndrome natural history study, including Boston Children's Hospital personnel costs and subawards to Icahn Mount Sinai Medical Center and Rush University for personnel costs as well.","city":"Boston","state":"MA","recipient_type":"organization","object_id":"202510729349300041"},{"grant_id":"1354c871ad844506436037db464386eb","tax_year":2024,"amount_type":"paid","amount_usd":100000,"noncash_amount_usd":null,"recipient_name":"Seaver Autism Center Icahn School of Medicine at Mount Sinai","recipient_ein":"136171197","match_tier":"A","match_confidence":1,"match_method":"reported_ein_in_bmf","purpose":"To fund the further development of the Phelan-McDermid syndrome Inventory for Psychiatric Symptoms (PIPS) tool, to better support individuals with Phelan McDermid syndrome and their caregivers with managing and intervening in neuropsychiatric episodes experienced by these individuals.","city":"New York","state":"NY","recipient_type":"organization","object_id":"202510729349300041"},{"grant_id":"e4c3d7f4a37fb217b70772d315d5c48a","tax_year":2024,"amount_type":"paid","amount_usd":55000,"noncash_amount_usd":null,"recipient_name":"Northeastern University","recipient_ein":"041679980","match_tier":"A","match_confidence":1,"match_method":"reported_ein_in_bmf","purpose":"To support a project seeking to expand a new natural communication sampling protocol called ROSCO (Rapid Online Sample of Communication). ROSCO is designed to elicit meaningful samples of communication from individuals with Phelan McDermid syndrome via online-video platforms like Zoom in approximately 15 minutes. This study will validate the ROSCO paradigm with the Phelan McDermid syndrome population longitudinally, using repeated samples to establish reliability and sensitivity to communication change over time.","city":"Boston","state":"MA","recipient_type":"organization","object_id":"202510729349300041"},{"grant_id":"16f100f0befa5c4026270ec254e2ca87","tax_year":2023,"amount_type":"paid","amount_usd":100000,"noncash_amount_usd":null,"recipient_name":"Children's Hospital Corporation DBA Boston Children's Hospital","recipient_ein":"042774441","match_tier":"A","match_confidence":1,"match_method":"reported_ein_in_bmf","purpose":"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.","city":"Boston","state":"MA","recipient_type":"organization","object_id":"202440619349300914"},{"grant_id":"4b72c4c0c51048faf52feaa23666e609","tax_year":2023,"amount_type":"paid","amount_usd":55000,"noncash_amount_usd":null,"recipient_name":"Clemson University Foundation","recipient_ein":"570426335","match_tier":"A","match_confidence":1,"match_method":"reported_ein_in_bmf","purpose":"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.","city":"Clemson","state":"SC","recipient_type":"organization","object_id":"202440619349300914"},{"grant_id":"d180f5d1af11065fb4841816a83e8354","tax_year":2023,"amount_type":"paid","amount_usd":55000,"noncash_amount_usd":null,"recipient_name":"University of Miami","recipient_ein":"590624458","match_tier":"A","match_confidence":1,"match_method":"reported_ein_in_bmf","purpose":"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.","city":"Coral Gables","state":"FL","recipient_type":"organization","object_id":"202440619349300914"},{"grant_id":"eb0a85ac06081f9b9a027d5be6941fb2","tax_year":2023,"amount_type":"paid","amount_usd":10000,"noncash_amount_usd":null,"recipient_name":"Autism Science Foundation","recipient_ein":"264522309","match_tier":"A","match_confidence":1,"match_method":"reported_ein_in_bmf","purpose":"To model neuroinflammation and neuropsychiatric regression in profound autism.","city":"Scarsdale","state":"NY","recipient_type":"organization","object_id":"202440619349300914"},{"grant_id":"ee1e71f28fd29eaa304f4aca58cbcdc8","tax_year":2022,"amount_type":"paid","amount_usd":20900,"noncash_amount_usd":null,"recipient_name":"Icahn School of Medicine at Mount Sinai","recipient_ein":"136171197","match_tier":"A","match_confidence":1,"match_method":"reported_ein_in_bmf","purpose":"To define and retrospectively characterize the neurobehavioral profile of individuals with Phelan-McDermid syndrome and neuropsychiatric decompensation. To develop clinician and caregiver survey tools for qualitative assessment of clinical outcomes based on recommendations from the Phelan-McDermid syndrome Neuropsychiatric Consultation Group.","city":"New York","state":"NY","recipient_type":"organization","object_id":"202310699349301566"},{"grant_id":"46c9a6c6bb8104605af9add92a5ddee8","tax_year":2021,"amount_type":"paid","amount_usd":11688,"noncash_amount_usd":null,"recipient_name":"Kyle's Angels","recipient_ein":"851554186","match_tier":"A","match_confidence":1,"match_method":"reported_ein_in_bmf","purpose":"To fund travel assistance for individuals with Phelan-McDermid Syndrome and their families to events hosted by the Phelan-McDermid Syndrome Foundation, most notably the biennial international family conference.","city":"Saint Robert","state":"MO","recipient_type":"organization","object_id":"202240689349300049"}],"filings":[{"object_id":"202630699349300018","tax_period_end":"2025-12-31","filing_submission_date":null,"return_version":"2025v4.0","filing_year":2026,"tax_year":2025,"form_type":"990"},{"object_id":"202510729349300041","tax_period_end":"2024-12-31","filing_submission_date":null,"return_version":"2024v5.0","filing_year":2025,"tax_year":2024,"form_type":"990"},{"object_id":"202440619349300914","tax_period_end":"2023-12-31","filing_submission_date":null,"return_version":"2023v4.0","filing_year":2024,"tax_year":2023,"form_type":"990"},{"object_id":"202310699349301566","tax_period_end":"2022-12-31","filing_submission_date":null,"return_version":"2022v4.0","filing_year":2023,"tax_year":2022,"form_type":"990"},{"object_id":"202240689349300049","tax_period_end":"2021-12-31","filing_submission_date":null,"return_version":"2021v4.0","filing_year":2022,"tax_year":2021,"form_type":"990"}],"chunked":false,"dataset_version":"2026.09.0","built_at":"2026-09-03T21:13:09+00:00"}