2026-08-27T20:34:20-07:00 2025-12-31 990EZ 2025-01-01 811592495 ADCY5 ORG INC ADCY 8588827280 8914 Nottingham Pl La Jolla CA 92037 Steven Grossman President 8588827280 2026-08-27 2025 X X www.adcy5.org X X 83627 X 83404 223 0 0 0 0 0 0 0 0 0 0 0 0 0 83627 65000 0 0 2630 0 400 8291 76321 7306 125026 0 132332 125026 132332 0 0 0 0 125026 132332 0 0 125026 132332 ADCY5.org supports the following groups: families affected by the ADCY5 gene variant rare disease, clinicians treating patients, and researchers pursuing treatments. We achieve our goals through collaboration, or funding efforts. We look to identify anyone affected by, or interested in, the ADCY5 gene variant rare movement disorder. Provided families support related to ADCY5 related movement disorder via online meetings, one-on-one calls, and Slack channel. Discussed new treatments, potential clinical studies, and ways to manage the disease. 210 210 Connected doctors with each other and patients to share ADCY5 rare movement disorder information. Connecting doctors has helped improve the care of new and existing patients 322 322 Acted as conduit between researchers, doctors, and patients. We met with researchers by web meeting, in-person, or at conferences to understand the status of current programs related to treatments and the basic science of the condition. Educated researchers on current patient challenges. 174 174 706 Steven Grossman President 20 0 0 0 Dan Bradbury Chairman of the Board 2 0 0 0 Jason Keyes Board Treasurer 1 0 0 0 Tom Coll Board Secretary 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 CA Steven Grossman 8914 Nottingham Pl La Jolla CA 92037 8588827280 0 0 0 0 0 0 0 0 0 0 0 NONE NONE 1 X 12762 1831 80399 87121 83627 265740 12762 1831 80399 87121 83627 265740 265740 6 0 0 6 265746 0.99998 0.99987 X 12672 1831 80399 87121 83627 265650 12672 1831 80399 87121 83627 265650 265650 6 6 6 0 0 0 0 6 12678 1831 80399 87121 83627 265656 0.99998 0.99987 0.00002 0.00013 X Form 990-EZ, Part I, Line 10 Grant to the Paris Brain Institute to defray costs of a PhD that focuses only on our rare disease, ADCY5-RMD. It also helps support a mouse colony that is used for research in addition to other R&D costs. Form 990-EZ, Part I, Line 16 Costs related to out-of-state scientific conference registration and travel costs. During March, April, and May, I was consumed with renovating and prepping a new place for my disabled adult daughter to live. Then from June until the middle of August, due to a California Disability Services bureaucratic mistake, I had to accompany her to Washington, DC for an important internship to be her healthcare aide 24/7. She has 24/7 in CA, but they refused her care in DC when her case was not processed properly by California. I am in the process of handing over all of our organization's books to a board member who is in finance.