Patient Participation

Cincinnati, August 5th: Family Conference and Baseball Game

Cincinnati Children’s is excited to host a family conference on August 5th from 12- 2 pm ET, featuring presentations from their top experts in CCM care, including special guest Connie Lee! After the conference, enjoy CCM family night at the Cincinnati Reds baseball game starting at 4:10 pm ET! Reserve your tickets for the game…

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…