CCM3 Action Leadership
Connie is the founder of Angioma Alliance and has a daughter Julia whose cavernous angiomas are caused by the CCM3 mutation.
Liz Neuman, Development Chair
Liz has been the major fundraiser for Angioma Alliance through the annual MadoroM Wine Release and Auction held in Bakersfield, CA. She is affected by the CCM3 mutation as are her two sons, Jake and Sam.
Karen Asbury, Treasurer
Karen has been the Treasurer of Angioma Alliance since 2007. Her late husband Mitch as well as her daughter Callie are affected by the CCM3 mutation.
Board of Directors
Medical and Scientific Advisor
Dr. Awad is a Professor of Neurosurgery at the University of Chicago. He is a past Chairman of the Cerebrovascular Section of the American Association of Neurological Surgeons and Congress of Neurological Surgeons and the 51st President of the Congress of Neurological Surgeons. Dr. Awad is a leading cavernous angioma researcher and co-editor of the text Cavernous Malformations.
The Big Picture
CCM3 Action connects people affected by the ultra-rare Cerebral Cavernous Malformation Type 3 (CCM3) genetic mutation. Our mission is to create a supportive community, provide opportunities for quality treatment, and accelerate research toward a cure.
Toward this end, CCM3 Action plans to:
1. Conduct a search for all CCM3 diagnosed individuals using genetic testing laboratories, the internet, and other available channels.
2. Establish a CCM3 Care and Clinical Research Center at the University of Chicago. The purpose of the Center is to provide an opportunity for consistent, expert evaluation and care for those with CCM3. Additionally, information gleaned from these evaluations will be incorporated into the Angioma Alliance DNA/Tissue Bank and Clinical Database and used for hypothesis generation. We will also encourage CCM3 Action members to donate tissue should they have surgery. CCM3 Action will subsidize both travel and medical expenses for participants.
3. Fund pilot research projects related to CCM3 using a competitive RFP process
4. Sponsor CCM3 family gatherings as a way to increase community cohesion and participation
5. Create and provide educational materials targeted at adult patients, affected children and siblings, family members, physicians, and teachers.
6. Maintain a website with resources for patients, families, physicians, and researchers, and opportunities for online social networking
7. Create an independent Scientific Advisory Board and an independent Board of Directors
8. Initiate other activities to fulfill our mission as may become available