2023-03-10T07:55:40-07:00 2022-12-31 990 2022-01-01 043673104 PHELAN MCDERMID SYNDROME FOUNDATION PHEL 9414858000 8 Sorrento Drive Osprey FL 34229 Rhonda Blumenthal Chief Executive Officer 7703109572 2023-03-10 1 1 11 1 AAL2 2022 2023-04-26 12:10:37Z Rhonda Blumenthal 8 Sorrento Drive Osprey FL 34229 856254 0 X pmsf.org X 2002 FL The mission of the Phelan-McDermid Syndrome Foundation is to improve the quality of life of people affected by Phelan-McDermid syndrome worldwide by accelerating research, providing family support and raising awareness. 10 10 10 50 0 0 758981 744192 50947 34615 123 -8775 86951 83616 897002 853648 11688 20900 0 0 362955 448440 0 0 137307 122781 245923 497424 715263 399578 138385 1940384 2113920 24329 59480 1916055 2054440 The mission of the Phelan-McDermid Syndrome Foundation is to improve the quality of life of people affected by Phelan-McDermid Syndrome worldwide by accelerating research, providing family support and raising awareness. 0 0 235949 20900 15366 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. We provide information and access to research opportunities as well as offer financial assistance for travel costs to certain research sites. We work with our 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. 160847 0 19009 FAMILY SUPPORT: The Phelan-McDermid Syndrome Foundation (PMSF) is the largest patient advocacy group (PAG) for Phelan-McDermid syndrome (PMS) in the world. The PMSF was established to provide critical information and support to empower families affected by this rare condition. The PMSF and our entirew community of families, researchers, clinicians, and friends share everything we know about PMS and provide connections to a global community. We have created a worldwide virtual and local community. The PMSF 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. Families report that the PMSF International Family Conference is life-changing. In non-conference years, the PMSF strives to create a virtual or in-person regional conference. We partner with a clinical care center in a major city and invite speakers to present their work to our families. The PMSF Regional REPs coordinate periodic in-person gatherings to help families create connections, share stories and support each other. 43010 0 0 ADVOCACY AND AWARENESS: Everyone in the Phelan-McDermid community is an advocate who increases awareness, hope, and action toward our Foundation's mission. Our program goal is to raise awareness and to empower stakeholders to advocate for research, funding, support services, and legislative initiatives that improve the lives of everyone affected by PMS. This program is focused on sharing information and establishing partnerships within the medical, research, and corporate, pharmaceutical, and rare disease communities. Program objectives include (1) enlisting support in the advancement of research and research funding by participating in national and international forums focused on developing treatments, therapies, and cures for rare diseases. (2) Developing collaborations with national organizations focused in improving the quality of life and quality of services for people with disabilities and disseminating information to the PMS community. (3) Developing legislative priorities for the PMS community and working collaboratively with local, state, country and international bodies to share the PMS patient voice on legislative issues that affect our population. 0 0 0 439806 1 1 0 0 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 6 0 1 10 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 X 10 10 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 DC 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 0 X X 107739 0 3232 Alycia Halladay President 5 0 X X 0 0 0 Denise Croden Vice President 5 0 X X 0 0 0 Michael O'Boyle Treasurer 5 0 X X 0 0 0 Heidi Grabenstatter Secretary 5 0 X X 0 0 0 Cynthia Schauss Director 5 0 X 0 0 0 Chris Jauch Director 5 0 X 0 0 0 Catherine Valcourt-Pearce Director 5 0 X 0 0 0 Mike Fraunces Director 5 0 X 0 0 0 Lisa Brown Director 5 0 X 0 0 0 107739 0 3232 1 0 0 0 0 0 0 38350 0 17610 688232 0 744192 Registration fees 813212 19009 19009 0 0 Store sales 453220 240 240 0 0 Travel program reimbursement fees 813212 15366 15366 0 0 0 0 0 0 34615 -8775 -8775 0 0 0 0 0 0 0 0 0 0 0 0 0 0 86222 38350 2606 83616 0 83616 0 853648 25840 0 83616 20900 20900 0 0 0 0 0 0 108000 64800 21600 21600 297525 167403 62392 67730 10503 6201 2578 1724 642 0 642 31770 18551 6375 6844 56156 31376 14351 10429 5571 3725 1846 25332 4507 9890 10935 53056 29595 8086 15375 6900 6900 36692 36633 59 55867 55378 489 5394 187 5207 955 550 70 335 715263 439806 138150 137307 1352848 1550551 10000 3036 3937 13017 13017 0 0 574500 559432 1940384 2113920 24329 48845 10635 24329 59480 X 1915050 2054440 1005 0 1916055 2054440 1940384 2113920 138385 0 0 0 0 0 X 0 1 X 1 0 X 625444 477942 471225 758981 744192 3077784 625444 477942 471225 758981 744192 3077784 3077784 -2368 6163 886 123 -8775 -3971 541843 172279 88089 137898 118231 1058340 4132153 0.74484 0.62241 X Schedule A, Part II, Line 10 Net income from fundraising events, program income from registration fees and contracts RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 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 36577 0 -2383 1349 0 257 32588 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 13017 13017 0 0 0 0 0 0 856254 0 0 0 0 0 856254 0 -2606 -2606 853648 717869 0 0 0 0 0 717869 0 -2606 -2606 715263 Schedule D, Part V, Line 4 The organization will use the quasi-endowment funds which were 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 117656 35092 82564 0 0 0 0 0 1246 0 0 117656 35092 82564 0 0 0 0 0 1246 1246 81318 1 Icahn School of Medicine at Mount Sinai One Gustave L Levy Place Box 1075 New York NY 10029 136171197 501(c)(#) 20900 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. 1 0 Schedule I, Part I, Line 2 PMSF 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 expectations 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 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 organization. Board persident 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 people 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.