West Virginia

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

University of Virginia

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.