August 12, 2022 –Recursion Pharmaceuticals has ten US sites enrolling cavernous malformation patients in Phase 2 of their REC-994 Sycamore trial. This is the first industry-sponsored trial of a medicine for cerebral cavernous malformations, a massive milestone toward better treatments. The ninth site to open is Valley Hospital in Ridgewood, New Jersey, under the direction…
August 1, 2022 – The atorvastatin experimental proof of concept trial to treat cavernous malformations with symptomatic hemorrhage, hosted at the University of Chicago, has completed enrollment. We congratulate and are grateful to all those who are participating! Along with the atorvastatin trial, the parallel Trial Readiness project at the University of Chicago has also…
CCM2 exon 2-10 deletion research, led by Alliance to Cure Cavernous Malformation families and Duke University, has identified a new founder mutation. Read coverage in the Atlantic magazine. The collaborative work done by families affected by the CCM2 exon 2-10 deletion, a very specific form of the illness, is bringing CCM visibility and understanding to…
We need 400 Alliance to Cure Cavernous Malformation members with CCM to assist in the next phase of developing the CCM Health-Index by completing a 20-minute survey three times: now, in 6 months, and then again, in 12 months. The CCM Health-Index is the first CCM-specific tool to measure the impact of the illness on…
New Grants Support Organizations Prioritizing Diversity and Diagnosis in their Disease Areas CHARLOTTESVILLE, VA (November 3, 2021) — Today, the Chan Zuckerberg Initiative (CZI) announced $13 million in funding for 40 patient-led, rare disease advocacy organizations that are working alongside researchers and clinicians to accelerate research in their disease areas. These grants are part of…
