Patient Participation

Recursion Announces 10th Site Open for REC-994 Trial

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…

Atorvastatin Trial Has Completed Enrollment

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…

Alliance to Cure Cavernous Malformation Receives $600,000 Award from the Chan Zuckerberg Initiative to Advance Rare Disease Research

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…