2024-04-30T07:47:49-07:00 2023-12-31 582361357 GREGG S BOSSEN CPA PC 50 LENOX POINT SUITE C ATLANTA GA 30324 990 2023-01-01 455242623 CADASIL ASSOCIATION CADA 4016842760 10 SCHALKS CROSSING ROAD 501A PLAINSBORO NJ 08536 DEBRA ROBINSON Treasurer 2024-04-30 true DEBRA ROBINSON 999009999 true Gregg S Bossen P01444127 4048929513 2 AAL1 IAL1 FAL1 2023 2023-04-26 12:10:37Z 10 SCHALKS CROSSING ROAD 501A PLAINSBORO NJ 08536 49648 false X curecadasil.org X NJ The mission of CureCADASIL is to raise awareness of CADASIL, ensuring it will be universally recognized and understood by the medical community, enabling patients to be correctly diagnosed. We are dedicated to helping all touched by CADASIL, improving education available on CADASIL and promote and support research for this rare disease. 6 6 0 13 0 256732 49609 0 7 39 -23 0 256716 49648 10000 10000 0 0 0 1366 18900 108494 28900 118494 227816 -68846 340236 271390 0 340236 271390 The mission of CureCADASIL is to raise awareness of CADASIL, ensuring it will be universally recognized and understood by the medical community, enabling patients to be correctly diagnosed. We are dedicated to helping all touched by CADASIL, improving education available on CADASIL and promote and support research for this rare disease. false false 95412 CADASIL is an hereditary small vessel disease caused by mutations in the Notch3 gene. These mutations lead to progressive changes in the small brain arteries and reduced blood flow to the brain. We aim to share these CADASIL vessel-on-chip with the international CADASIL research community to promote CADASIL research. We aim to unite patients and the medical community toward the common goal of treatments and ultimately a cure for this rare genetic disease, by promoting communication, advocacy, research, and education.For the year ended December 31, 2023 the following programs and activities were operated:webinars for patients and investigators; a meeting that brought patients, family members, and caregivers together with investigators in an in-person meeting on June 24; quarterly newsletters to inform the CADASIL community; and participation in several rare disease educational meetings:-The Chan Zuckerberg Initiative (CZI) Neurodegeneration Challenge Network meeting June 5-9-The United Leukodystrophy Foundation annual meeting June 22-24-Annual Global Genes meeting September 19-20-The CZI Science in Society meeting September 20-23-The National Organization of Rare Diseases meeting October 16-17Maintaining and improving an educational website (www.cureCADASIL.org)Producing an educational brochure for patients and families on CADASILActivities directed toward research to find a treatment for CADASIL included:hosting a monthly meeting of key investigators to encourage their collaboration and research in CADASIL (the CADASIL Disease Modeling Group)advising clinical investigators and recruiting participants for 3 observational studies being conducted in the United States:-The CADASIL Consortium National Institutes of Health (NIH) Study-The National Heart Lung and Blood Institute/NIH CADASIL Study-The CZI-sponsored CADASIL study at Mt. Sinai Medical CenterConducting a search to find a registry platform to replace and improve a cureCADASIL- sponsored natural history study.Our major fundraising activity was the Million Dollar Bike Ride June10, a fundraising effort for research sponsored by the University of Pennsylvania Orphan Disease Center. All proceeds went to fund a grant for research in CADASIL.Finally, we continued to provide on-going patient and family support by answering questions sent to us online and at meetings, and connecting patients to physicians who treat patients with CADASIL. 95412 true true false false false false false false false false false false false false false false false 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 true 0 0 false 0 false false false false false false false 0 false false false false false false false X 6 6 false false true false false false false true true false false false true false false false false false false false DEBRA ROBINSON 4016842760 10 SCHALKS CROSSING ROAD PLAINSBORO NJ 08536 X SANDRA TALBIRD Trustee 5.00 0.00 X 0 0 0 VINITA BAHL Trustee 5.00 0.00 X 0 0 0 BERTRAM KASISKE President 20.00 0.00 X 0 0 0 PEDRO DE LENCASTRE Secretary 18.00 0.00 X 0 0 0 DEBRA ROBINSON Treasurer 18.00 0.00 X 0 0 0 JANE GUNTHER Research Ofc. 18.00 0.00 X 0 0 0 0 false false false 0 49609 49609 0 39 39 0 0 0 0 0 0 0 0 49648 39 X 10000 10000 0 0 0 0 0 0 0 0 0 0 0 11045 11045 0 0 0 84134 82196 1938 0 25 25 3188 1279 543 1366 0 0 1184 1184 0 0 0 0 0 1250 1250 STATE REGISTRATIONS 5699 5699 DUES AND SUBS 964 179 785 Printing and Publications 574 574 Postage and Shipping 371 371 60 60 118494 95412 21716 1366 314153 245268 26083 26122 0 0 0 0 0 0 0 0 0 0 0 0 0 340236 271390 0 0 X 130236 138669 210000 132721 340236 271390 340236 271390 -68846 X false false false X 12500 56709 49609 118818 0 0 0 0 12500 56709 49609 118818 15000 15000 30000 0 15000 15000 30000 88818 7 39 46 0 7 39 46 0 0 12500 56716 49648 118864 X 0.00000 0.00000 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED false UNIVERSITY OF PENNSYLVANIA 3601 WALNUT ST PHILADELPHIA PA 19104 231352685 10000 0 Rare Disease Research Bike Ride 0 1 Form 990, Part VI, Section A, Line 4 DOI/COI and Travel Reimbursement Form 990, Part VI, Section B, Line 11b No review was or will be conducted. Form 990, Part VI, Section C, Line 19 No documents available to the public.