2024-11-13T09:00:05-05:00 2023-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990 2023-01-01 832545342 Project 8p Foundation PROJ 787 Seventh Avenue 31st floor New York NY 10019 Bina Shah FounderCEOTre 2122483260 2024-11-13 true true John Mullins P01429307 2027706371 2024-11-13 2023 2024-10-15 13:58:12Z X Bina Shah 2026868 false X www.project8p.org X 2018 NY To accelerate the discovery of treatments and quality clinical care for children and adults with chromosome 8p disorders. 6 6 1 8 0 0 599258 1930820 0 12383 31051 49488 611641 2011359 153818 378466 0 20686 33875 0 94364 113575 514157 301268 913309 310373 1098050 1162555 2492008 188594 1162555 2303414 To accelerate the discovery of treatments and quality clinical care for children and adults with chromosome 8p disorders. false false 709338 348466 Research Progress:In 2023, the Foundation funded 4 research projects, collaborating with UCSD, Yale, Mount Sinai, Van Andel Institute, Autism BrainNet and others to advance the understanding of 8p disorders. Notably, ongoing studies include assessing genome architecture, cellular and mitochondrial dysfunction while supporting pioneering technologies and disease models to study the complex neurological disorder. These collectively marked a significant step toward identifying therapeutic options.We launched our 8p Insights Portal which offers analysis of patient reported data, clinical data, and research studies to approved stakeholders. It is proprietary and continuing to develop to inform insights into the disorder and access to our growing biorepository. 51201 Community Outreach:We supported over 200 families through open science and clinical research roundtables and our Share What Works programming where leading experts and families shared their findings, experiences, and goals towards improving quality of life due to unmet medical needs. 30001 30000 Clinics and Care:Our MultiDisciplinary clinic is implementing a standard of care with a large team of dedicated specialists to understand this rare complex disorder with tremendous support to families. Clinical Care Guidelines are under review towards publication. 790540 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 5 0 true 1 true false false false false false false false false false false false false X 6 6 true 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 X Jahn Marie Surette Director 1.00 0.00 X 0 0 0 Thomas Peterson Director 1.00 0.00 X 0 0 0 Mehul Shah Director 1.00 0.00 X 0 0 0 Wissam Nesr Director 1.00 0.00 X 0 0 0 Bina Shah FounderCEOTreasurer 5.00 0.00 X X 0 0 0 Shannon Clarke Director Secretary 1.00 0.00 X X 0 0 0 0 0 0 0 false false false Rare-X 1012 14th Street NW Suite 500 Washington DC 20005 Research 178601 Perlara PBC 6000 Shoreline Ct Ste 204 South San Francisco CA 94080 Research 133975 2 1930820 10000 1930820 31051 31051 64997 15509 49488 49488 2011359 0 0 80539 X 378466 378466 20686 10343 10343 3786 750 3036 1693 1693 37 37 463538 375650 8248 79640 5016 2694 392 1930 10809 3567 1738 5504 17838 9782 1593 6463 7310 6483 827 1325 1325 Other 2805 2805 913309 790540 28405 94364 415255 573374 732236 874742 15064 1043892 1162555 2492008 188594 0 188594 X 1162555 1303414 1000000 1162555 2303414 1162555 2492008 X 1098050 72409 -29600 X false true X true false X 213407 888647 632932 559258 1930820 4225064 213407 888647 632932 559258 1930820 4225064 990881 3234183 10 120 29 12383 31051 43593 4268657 0.75770 X Unusual grants Part II or Part III line 1 Unusual Grant: $1,600,000 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED X 2083731 72409 72409 2011322 37 37 2011359 913272 913272 37 37 913309 Footnote for uncertain tax position under FIN 48 (Part X) 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. 64997 64997 15509 64997 64997 15509 15509 49488 true University of Colorado 1800 N Grant St Ste 725 Denver CO 802031114 846049811 501c3 30000 Research Rice University 6100 Main St MSC 70 Houston TX 770051827 741109620 501c3 48682 Research Yale University PO Box 208356 New Haven CT 065208356 060646973 501c3 60686 Research UC SanDiego 9500 Gilman Dr La Jolla CA 92093 956006144 501c3 204311 Research 4 Officer directors etc family relationship Part VI line 2 Bina & Mehul Shah are married. 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. Explanation of other changes in net assets or fund balances Part XI line 9 Adjustment to tie net assets to the audit. List of other fees for services expenses Part IX line 11g Fundraising Fees: $96,607Social Media: $9,203HR Fees: $728Other Prof Fees: $19,793Research Fees: $337,207