2026-02-26T15:46:04-06:00 2025-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990 2025-01-01 464309387 Usher 1F Collaborative Inc % Melissa Chaikof USHE 3392212743 321 Walnut Street STE 228 Newtonville MA 02460 MELISSA CHAIKOF Chair and Trustee 3392212743 2026-02-26 true JOHN MULLINS P01429307 2027706371 2026-02-26 2025 2025-03-06 01:10:19Z Melissa Chaikof 321 Walnut Street Ste 228 Newtonville MA 02460 826632 false X www.usher1f.org X 2013 MA To fund medical research to find an effective treatment to save or restore the vision of those affected with Usher Syndrome Type 1F. 12 12 1 25 0 0 623437 463492 0 13030 15727 209249 264353 845716 743572 671155 696990 0 76942 88971 0 135617 123002 99524 871099 885485 -25383 -141913 781549 691312 3731 55407 777818 635905 To fund medical research to find an effective treatment to save or restore the vision of those affected with Usher Syndrome Type 1F. false false 712836 696990 2025 Grants to Research Labs: Harvard Medical School, David Corey Lab: $320,000 Development of gene therapies for Usher 1F University of Oregon Institute of Neuroscience, Monte Westerfield Lab: $80,000 Testing existing drugs for repurposing for Usher 1F 2025 Grant for year 4 of RUSH1F, 4-year natural history study in partnership with Foundation Fighting Blindness: $200,000. 2026 is year 4 of 4. This study will provide critical data for a future clinical trial. $5000 awarded to Usher Syndroom, Netherlands, for support/sponsorship of international Usher syndrome scientific research conference Total payment to Unravel Biosciences to identify drugs for repurposing for Usher 1F: $45,610 with an additional $45,610 due early 2026 at conclusion of study. Total grants awarded in 2025: $350,610 Key Research advances realized in 2025: Harvard conducting further preclinical testing of mini-gene Harvard team published the following paper in peer-reviewed journal: Mini-Pcdh15b Gene Therapy Rescues Visual Deficits in a Zebrafish Model of Usher Syndrome Type 1F https://www.biorxiv.org/content/10.1101/2025.11.05.686814v1 2 more papers in progress from Harvard lab for publication in 2026 Corey lab is now testing gene therapy from The Salk Institute, Samuel Pfaff lab, and early results are exciting. Hired a consultant to take our mini-gene through the next steps to apply for a clinical trial. Agreement in progress. Will include with 2026 audit since its not yet signed. 712836 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 1 0 true 1 true false false false false false false false false false false false false X 12 12 true false false false false false false true true false false true true true true false false false false false MA X The Organization 3392212743 321 Walnut Street 228 Newtonville MA 02460 X Melissa Chaikof Chair and Trustee 40.00 0.00 X X 0 0 0 Elliot Chaikof Vice Chair and Trustee 2.00 0.00 X X 0 0 0 Frank Gentile Treasurer and Trustee 2.00 0.00 X X 0 0 0 Jared Root Secretary and Trustee 4.00 0.00 X X 0 0 0 Joshua Cohen Trustee 2.00 0.00 X 0 0 0 Rachel Root Trustee 2.00 0.00 X 0 0 0 Julian Seewald Trustee 2.00 0.00 X 0 0 0 Sari L Springer Trustee 2.00 0.00 X 0 0 0 Heather Rosenstein Trustee 2.00 0.00 X 0 0 0 Eric Halper Trustee 2.00 0.00 X 0 0 0 Margi Levitt Trustee 2.00 0.00 X 0 0 0 Dorie Shapiro Trustee 2.00 0.00 X 0 0 0 0 0 0 0 false false false 463492 463492 15727 15727 346721 83060 263661 263661 Other 900099 692 692 692 743572 692 0 279388 X 696990 696990 80431 80431 2342 2342 6198 6198 1150 1150 9555 9555 40977 2986 8628 29363 18568 11812 6756 24928 14532 10396 806 778 28 326 195 131 3139 3139 Dues and Subscriptions 75 75 885485 712836 37032 135617 15521 18062 660358 633441 105670 28560 11249 781549 691312 3731 55407 3731 55407 X 668148 580805 109670 55100 777818 635905 781549 691312 X -141913 0 X false true X true false X 596676 1081791 429829 623437 463492 3195225 596676 1081791 429829 623437 463492 3195225 126821 121813 95480 163602 263017 770733 126821 121813 95480 163602 263017 770733 2424492 1126 1187 5955 13030 15727 37025 1126 1187 5955 13030 15727 37025 692 692 597802 1082978 435784 636467 479911 3232942 0.74990 0.84130 0.01000 0.01000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED X 743572 743572 743572 885485 885485 885485 Part X, Line 2-Text in footnote regarding FIN 48 (ASC 740) The accounting standard on accounting for uncertainty in income taxes addresses the determination of whether tax benefits claimed or expected to be claimed on a tax return should be recorded in the financial statements. Under that guidance, The Collaborative may recognize the tax benefit from an uncertain tax position only if it is more likely than not that the tax position will be sustained on examination by taxing authorities based on the technical merits of the position. The tax benefits recognized in the financial statements from such a position are measured based on the largest benefit that has a greater than 50 likelihood ofbeing realized upon ultimate settlement. There were no unrecognized tax benefits identified or recorded as liabilities at year-end.The Collaboratives policy would be to recognize interest and penalties, if any, on tax positions related to its unrecognized tax benefits in income tax expense in the financial statements. No interest and penalties were assessed or recorded during the year. Fundraising 346721 346721 83060 346721 346721 83060 83060 263661 true Harvard University 1033 Massachusetts Ave Cambridge MA 02138 042103580 501c3 320000 University of Oregon Foundation 1720 E 13th Ave Eugene OR 97403 936015767 501c3 80000 Unravel Biosciences 196 Boston Ave Suite 1000 Medford MA 02155 86640 Foundation Fighting Blindness 6925 Oakland Mills Road Columbia MD 21045 237135845 501c3 200000 LSU Foundation 3796 Nicholson Drive Baton Rouge LA 70802 726020969 501c3 5350 4 1 Officer directors etc family relationship Part VI line 2 Melissa Chaikof is married to Elliot Chaikof. Rachel Root is married to Jared Root. Sari Springer is Elliot Chaikofs sister. Form 990 governing body review Part VI line 11 The 990 is reviewed by an officer of The Board prior to filing. Conflict of interest policy compliance Part VI line 12c Individuals with any actual or possible conflict of interest must disclose its existence to The Board. The Board votes to decide if a conflict of interest exists. Board Members sign an annual statement confirming their knowledge and understanding of the conflict of interest policy. Governing documents etc available to public Part VI line 19 The Organization will provide document copies upon request. Explanation of other changes in net assets or fund balances Part XI line 9 Prior Period Adjustment of -$292,083. This adjustment was needed to reconcile the ending balance on the 2022 990 to the beginning balance on the 2023 Audited Financial Statements. List of other fees for services expenses Part IX line 11g Professional Services: $60,000 Information Technology: $11,689 Other: $5,122