2024-05-06T12:36:06-04:00 2023-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990 2023-01-01 464309387 Usher 1F Collaborative Inc USHE 321 Walnut Street STE 228 Newtonville MA 02460 Melissa Chaikof Chair and Trust 3392212743 2024-04-17 true Melissa Chaikof XXX-XX-XXXX true John Mullins P01429307 2027706371 2024-05-06 2 00 AAL2 IAL1 2023 2023-04-26 12:10:37Z Melissa Chaikof 446533 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 17 0 0 1081791 429829 0 0 1187 16704 1082978 446533 719100 432142 0 76606 72178 0 180713 137126 141944 932832 646264 150146 -199731 1300335 810900 5320 7699 1295015 803201 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 433953 432142 David Corey Lab at Harvard Medical School $170,000:-In April, Maryna Invanchenko, MD, PhD, presented at the Association for Research in Vision and Ophthalmology (ARVO) Annual Meeting. In her presentation she shared the exciting results that the mini gene developed to treat Usher 1F rescued vision in a zebrafish model. -In August, published results of a second strategy, utilizing base editing to successfully restore hearing in an Usher 1F mouse model-In November, published results revealed a third strategy gene therapy employing dual vectors also showed promising results in restoring vision in multiple retinal models, including human retinal organoids and non-human primate retina. -The lab continued its collaboration with the Samuel Pfaff Lab at the Salk Institute for Biological Studies, on a promising gene therapy approach called RNA end-joining (REJ) technology. Monte Westerfield Lab at University of Oregon Institute of Neuroscience $32,500:-In December, published results revealed that a potent antioxidant compound, Hexafluoro, improved visual function and slowed photoreceptor cell death in the Usher 1F zebrafish model. Zubair Ahmed Lab at University of Maryland School of Medicine $25,000:-In December, published results detailed sustained rescue of visual function in a mouse model of Usher 1F utilizing a dual AAV-based gene therapyRUSH1F Natural History Study, $200,000:-44 patients enrolled-Patients from first centers completed year 2 screening with two completing year 3-Patients from later centers added completed year 1 and beginning year 2 In addition, after our initial funding to our research labs, our Harvard team has raised an additional $6.5 million for their Usher 1F research projects, including $250,000 in 2023. 433953 true true false false false false false false false false false false false false false true true false false false false false false false false false false true false false false false false false false false false false false false false false false false false false false false true 2 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 false false false false false false MA X The Organization 3392212743 321 Walnut Street Newtonville MA 02460 X Sari L Springer Trustee 2.00 0.00 X 0 0 0 Laurie Shapiro Trustee 2.00 0.00 X 0 0 0 Julian Seewald Trustee 2.00 0.00 X 0 0 0 Eric Halper Trustee 2.00 0.00 X 0 0 0 Heather Rosenstein Trustee 2.00 0.00 X 0 0 0 Lijun Sun Trustee 2.00 0.00 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 Elliot Chaikof Vice Chair and Trustee 2.00 0.00 X X 0 0 0 Melissa Chaikof Chair and Trustee 40.00 0.00 X X 0 0 0 Jared Root Secretary 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 0 0 0 0 false false false 429829 3168 429829 10749 10749 10749 Other 900099 5955 5955 5955 446533 5955 0 10749 X 427500 427500 4642 4642 65218 65218 1948 1948 5012 5012 1305 1305 7871 7871 79617 19049 60568 8997 506 8491 20184 7203 12981 18591 18591 4714 4681 33 Dues and Subscriptions 665 665 646264 433953 31598 180713 13681 47815 930431 753285 356223 9800 1300335 810900 5320 7699 5320 7699 X 1104973 799201 190042 4000 1295015 803201 1300335 810900 -199731 -292083 0 X false true X true false X 773741 1224057 596676 1081791 429829 4106094 773741 1224057 596676 1081791 429829 4106094 97448 93871 126821 121813 95480 535433 97448 93871 126821 121813 95480 535433 3570661 10473 9872 1126 1187 5955 28613 10473 9872 1126 1187 5955 28613 784214 1233929 597802 1082978 435784 4134707 0.86360 0.86430 0.01000 0.01000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED X 446533 446533 446533 646264 646264 646264 Footnote for uncertain tax position under FIN 48 (Part X) 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 of being 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. true Harvard University 1033 Massachusetts Ave Cambridge MA 02138 042103580 501c3 170000 University of Oregon Foundation 1720 E 13th Ave Eugene OR 97403 936015767 501c3 32500 University of Maryland Baltimore Fo 220 Arch St 13th Floor Baltimore MD 21201 311678679 501c3 25000 Foundation Fighting Blindness 6925 Oakland Mills Road Columbia MD 21045 237135845 501c3 200000 4 Monitoring procedures (Part I, line 2) The Organization receives written updates from the grant recipients every six months or as needed if there are important progress updates. The Organization also speaks to the funded researchers periodically to receive updated either via phone or email. 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. 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: $60,000Information Technology: $15,170Other: $3,868Admin: $579