Community Alliance
Two current Community Alliances include portions of West Virginia. The Greater DC Community Alliance includes Martinsburg and northeastern West Virginia. The Three Rivers Community Alliance includes Morgantown, Pittsburgh, and Youngstown.
Greater DC Alliance to Cure Cavernous Malformation Community
Welcome to the Greater DC Alliance to Cure Cavernous Malformation Community. We are a group of Alliance to Cure Cavernous Malformation members and friends who provide mutual support, reach out to the medical community, and organize events. Geographically, our group includes the Greater DC Area.
Greg Upwall – Chair
Carlos Casaus – Vice-Chair
Recruiting! – Treasurer
Cameron Schmitz – Events Committee Chair
Kristine Wood – Outreach and Engagement Chair
To contact us, please email dcangioma@gmail.com.
You can also become a member of our Facebook group to join our group discussion.
Three Rivers Community Alliance
Founded in 2020, the Three Rivers Alliance to Cure Cavernous Malformation Community includes members in western Pennsylvania, Youngstown, OH, and Morgantown, WV.
Chair: Karen Snavely
Treasurer: Patricia Kosikowski
Peer Support/Community Outreach Committee Chair: Michelle Shaffer
Events Committee Chair: Darla Clayton
Please contact us at 3rivers.alliance@gmail.com or through our Facebook group if you live anywhere in the Three Rivers region and would like to join.
Outside of these areas
Visit our Angioma Community Alliance page to learn more about how you can meet others in your area, provide mutual support, organize events, and raise awareness. We need 5 people to get a Community Alliance off the ground. Likely, we already know a few interested members near you! Please contact Darla Clayton at darla@alliancetocure.org to let her know you are interested in participating.
In the meantime, please request to join our Alliance to Cure Cavernous Malformation Mid-Atlantic Facebook Group for peer support and more information about local resources.
Clinical Centers
For a complete list of Centers of Excellence, please visit our Center of Excellence page.
Centers of Excellence and CCM Clinical Centers nearest you are:
Cincinnati Children’s Hospital Medical Center
Medical Director: Dr. Sudhakar Vadivelu
Central Scheduling: (513) 636-4726
Medical Director: Dr. Min Park
Phone: (434) 924-2735
Upcoming Events
Please see our Calendar for a full listing of events online and around the country.
