This organization files Form 990, which has no section for application policy. Its filings cannot say either way.
The latest filing we hold carries no statement about applications. That is not the same as closed: public-charity Form 990s have no field for it, and many foundations leave the section blank.
Grants paid by year
Total assets by year
Where the money went · FY2025
Form 990 splits expenses into program services, management and fundraising. The split is self-reported, and a grantmaker, a research institute and a direct-service nonprofit book the same work differently. A line the return does not carry reads "not available"; it is never counted as zero.
| Year | Form | Revenue | Expenses | Grants paid | Assets | Net assets |
|---|---|---|---|---|---|---|
| FY2025 | 990 | $1,245,861 | $1,082,374 | $105,000 | $2,220,653 | $2,066,185 |
| FY2024 | 990 | $1,306,884 | $1,437,564 | $326,392 | $2,109,869 | $1,899,342 |
| FY2023 | 990 | $1,062,761 | $1,098,819 | $222,500 | $2,243,009 | $2,026,828 |
| FY2022 | 990 | $853,648 | $715,263 | $20,900 | $2,113,920 | $2,054,440 |
| FY2021 | 990 | $897,002 | $497,424 | $11,688 | $1,940,384 | $1,916,055 |
| FY2020 | 990 | $560,200 | $455,390 | $0 | $1,639,670 | $1,516,477 |
Figures are as reported on the e-filed return, with no restatement. Fiscal years are the funder's own tax year, labelled by the calendar year the period ends in. A blank line means the return does not carry that figure; a real zero shows as $0. When an amended return replaces an original, every figure here uses the amended return. The original is not shown. Giving is what the funder actually paid out toward its charitable purpose in the year (qualifying distributions on Form 990-PF, charitable disbursements otherwise). Assets are what it holds; giving is what moves.
Recipient focus areas
Where recipients are
Based on the 100% of grant rows we could match to an organization record. The rest stay as reported. The IRS assigns the NTEE category when it grants exemption. It often reflects the original filing, not today's giving.
| Recipient | Purpose | Amount | Year | Source |
|---|---|---|---|---|
| Boston Children's HospitalBoston, MA | 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. | $116,392 | 2024 |
Recipients are shown as the funder wrote them on the return. A recipient with a link was matched to an organization record; the rest stay as reported and are never guessed.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Diane Linnehan | Chief Operating Officer/Co-interim CEO | 40 | $117,089 |
| Lauren Schmitt | Chief Science Officer | 40 | $108,138 |
| Shira Johnson | Chief Development Officer/Co-Interim CEO | 40 | $54,382 |
| Priscilla Hackstadt | Chief Financial Officer |
From the officer list on the latest e-filed return. Compensation is as reported there; a blank means the return carries no figure.
| Seaver Autism CenterNew York, NY | 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. | $100,000 | 2024 |
| Children's Hospital of Los AngelesLos Angeles, CA | 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. | $100,000 | 2025 |
| Children's Hospital CorporationBoston, MA | 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. | $100,000 | 2023 |
| Clemson University FoundationClemson, SC | 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. | $55,000 | 2023 |
| Northeastern UniversityBoston, MA | 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. | $55,000 | 2024 |
| University of MiamiCoral Gables, FL | 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. | $55,000 | 2023 |
| Icahn School of Medicine at Mount SinaiNew York, NY | 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. | $20,900 | 2022 |
| Kyle's AngelsSaint Robert, MO | 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. | $11,688 | 2021 |
| Autism Science FoundationScarsdale, NY | To model neuroinflammation and neuropsychiatric regression in profound autism. | $10,000 | 2023 |
| 16 |
| $48,022 |
| Rhonda Blumenthal | Chief Executive Officer | 40 | $30,446 |
| Denise Croden | President | 5 | $0 |
| Ben Holocher | Vice President | 5 | $0 |
| Lisa Brown | Secretary | 5 | $0 |
| Michael Cento | Treasurer | 5 | $0 |
| Catherine Valcourt-Pearce | Director | 2 | $0 |
| Rebecca Buchanan | Director | 2 | $0 |
| Eden Rivera | Director | 2 | $0 |
| Dr Lori Levi | Director | 2 | $0 |
| Heidi Grabenstatter Phd | Director | 2 | $0 |
Nearest by size, location and giving pattern in the database. Geography weighs heavily. Treat it as a starting list, not a ranking of fit.
Form 990 · FY2024 · period ending Dec 31, 2024IRS bulk XML
Filing id 202510729349300041
Form 990 · FY2023 · period ending Dec 31, 2023IRS bulk XML
Filing id 202440619349300914
Form 990 · FY2022 · period ending Dec 31, 2022
Filing id 202310699349301566
Form 990 · FY2021 · period ending Dec 31, 2021
Filing id 202240689349300049
Form 990 · FY2020 · period ending Dec 31, 2020
Filing id 202140779349301614
Form 990 · FY2019 · period ending Dec 31, 2019
Filing id 202040809349301209
Form 990 · FY2018 · period ending Dec 31, 2018
Filing id 201921709349300017
Form 990 · FY2017 · period ending Dec 31, 2017
Filing id 201801499349300530
Form 990 · FY2016 · period ending Dec 31, 2016
Filing id 201711869349301216
IRS filings are the source for every fact on this page. Nothing a model writes is ever a source; it can only point at a row here.