2025-11-05T16:40:23-05:00 2024-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990 2024-01-01 832545342 Project 8p Foundation % Bina Shah PROJ 2122483260 787 Seventh Avenue 31st floor New York NY 10019 BINA SHAH FounderCEOTreasurer 2122483260 2025-11-05 true true JOHN MULLINS P01429307 2027706371 2025-11-05 2024 2025-03-06 01:10:19Z Bina Shah 787 Seventh Avenue 31st floor New York NY 10019 1888508 false X www.project8p.org X 2018 NY To empower a unified community for chromosome 8p heroes for a meaningful life today while accelerating treatments for tomorrow. Activities include clinical care, research, AI data-driven platform and biorepository, and education and advocacy. 4 4 3 10 0 0 1930820 1787094 19288 31051 53281 49488 28845 2011359 1888508 378466 491099 0 20686 248683 0 51294 514157 647660 913309 1387442 1098050 501066 2492008 2943272 188594 86971 2303414 2856301 To empower a unified community for chromosome 8p heroes for a meaningful life today while accelerating treatments for tomorrow. Activities include clinical care, research, AI data-driven platform and biorepository, and education and advocacy. false false 927478 468599 Scientific Programs: Project 8p Foundation partners with top researchers and biopharma to uncover the causes of chromosome 8p disorders and improve the lives of those affected. Our work addresses urgent biological questionssuch as symptom progression, mitochondrial dysfunction, gut-brain interactions, and cellular stressto deliver actionable clinical tools for families today, while accelerating discoveries that can lead to scalable treatments for all communities affected by complex neurodevelopmental and neuromuscular conditions. Were advancing innovative technologies and accelerating therapeutic discovery by harnessing data in new ways. Our proprietary 8p Insights Portal is a growing, patient-centered resource that integrates clinical records, caregiver-reported outcomes, and biospecimen datadriving scientific breakthroughs and delivering meaningful impact for those living with chromosome 8p disorders. 218505 2500 19288 Community Outreach & Conferences: Project 8p supported over 200 families with clinical tools, education, and services. We hosted a three-day Family & Science Conference, bringing together researchers, clinicians, and families to foster collaboration and accelerate progress. Through monthly roundtables and ongoing stakeholder education, we promote a team science approach while sharing the latest research, clinical insights, and lived experiences. These efforts strengthen our shared goals and ensure the voices of those affected by 8p remain central to every initiative. 34196 20000 Patient Impact (Clinics & Care): Project 8p advanced its mission to improve clinical care for individuals with chromosome 8p disorders through several key initiatives. We published the first-ever Clinical Care Guidelines for 8p, providing an evidence-informed framework to guide physicians and care teams worldwide. We also launched the Patient Navigator, a free, interactive, online tool that helps families and clinicians understand symptoms across body systemsdrawing on real-world data from our 8p Insights Portal.Additionally, we expanded our Multidisciplinary Hospital Clinic Model, supporting the development of coordinated care hubs that bring together specialists to provide comprehensive, patient-centered services. These efforts mark important strides in reducing diagnostic delays, improving care coordination, and empowering families with accessible, data-driven resources. 1180179 true true false false false false false false false false false false false false false true true false false false false false false false true false false true false false false false false false false false false false false false false false false false false false false true 7 0 true 3 true false false false false false false false false false false false false X 4 4 false false false false false false false true true false false true true true true true true false false false X X The Organization 2122483260 787 Seventh Avenue 31st floor New York NY 10019 Lauren Chaby Executive Director 40.00 0.00 X 102083 0 0 Wissam Nesr Director 1.00 0.00 X 0 0 0 David Jackson Director 1.00 0.00 X 0 0 0 Jahn Marie Surette Director 1.00 0.00 X 0 0 0 Bina Shah FounderCEOTreasurer 5.00 0.00 X X 0 0 0 Erica Seaborne Secretary 1.00 0.00 X 0 0 0 102083 0 0 1 false false false 1787094 1787094 Registrations 900099 19288 19288 19288 53281 53281 28845 28845 28845 1888508 19288 0 82126 X 425418 425418 2500 2500 63181 63181 102083 56761 30143 15179 127025 70629 37507 18889 19575 10884 5780 2911 20576 6398 13716 462 20424 6351 13615 458 1141 1141 400944 363845 35891 1208 5215 4324 891 8212 2327 4312 1573 49777 35149 4348 10280 33714 27836 5544 334 97962 97962 1294 1294 Other 8401 6614 1787 1387442 1180179 155969 51294 573374 1424495 874742 289660 1043892 1229117 2492008 2943272 188594 71422 15549 188594 86971 X 1303414 1706301 1000000 1150000 2303414 2856301 2492008 2943272 501066 51821 0 X false true X true false X 888647 632932 559258 1930820 1787094 5798751 888647 632932 559258 1930820 1787094 5798751 2293264 3505487 120 29 12383 31051 53281 96864 5895615 0.59460 0.75770 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED X 1939188 51821 51821 1887367 1141 1141 1888508 1386301 1386301 1141 1141 1387442 Part X, Line 2-Text in footnote regarding FIN 48 (ASC 740) The Organization follows the Financial Accounting Standards Board Accounting Standards Codification, which provides guidance on accounting for uncertainty in income taxes recognized in The Organizations financial statements, if any. As of year end, The Organization had no unrecognized tax benefits related to uncertain tax positions in its information return that would qualify for either recognition or disclosure in its financial statements. The Organizations policy would be to recognize interest and penalties on tax positions related to its unrecognized tax benefits in income tax expense in the financial statements. Through year end, there have been no matters that would have resulted in an accrual for interest and/or penalties. 28845 28845 28845 28845 28845 true Childrens Hospital Colorado 111 S Tejon St Suite 309 Colorado Springs CO 80903 840813462 501c3 20000 Clinical Care The Regents of the Univ of Cal 1111 Franklin St Oakland CA 94607 943067788 501c3 220994 Research University of Connecticut 352 Mansfield Rd Storrs Mansfield CT 06269 060772160 501c3 79923 Research UC SanDiego 9500 Gilman Dr La Jolla CA 92093 956006144 501c3 49641 Research Uplifting Athletes 8 Atkinson Drive Unit 574 Doylestown PA 18901 341986485 501c3 10000 Research Yale University PO Box 208356 New Haven CT 065208356 060646973 501c3 79647 6 Form 990 governing body review Part VI line 11 The Final 990 (filed with the IRS) will be available at the next meeting of the board for inspection. In addition, upon request of any board member, a copy will be provided. If there are any material changes, an amended 990 will be filed. Conflict of interest policy compliance Part VI line 12c The Organization enforces the conflict of interest policy by monitoring known relationships, questionnaires, and noting any changes in disclosed information. Any conflict is reviewed by the board before a decision is made as to whether to approve the transaction. Form 990 availability to public Part VI line 18 These documents are available to the public on its website. Governing documents etc available to public Part VI line 19 These documents are available upon request. List of other fees for services expenses Part IX line 11g HR Fees: $3,961Other Prof Fees: $39,975MarCom: $20,424Research Fees: $347,102