How We Use Your Donations

Your donations enable us to continue our current programs and expand these to achieve our mission. Last year, 80% of every dollar was spent on helping people affected by CCM. This far exceeds the suggested 75%.

In a typical year, your donations support:


  • Fund research seed grants for ground-breaking projects.
  • Host an annual International CCM Scientific Meeting, the only meeting of its kind, to discuss cutting-edge research to find a treatment and cure.
  • Facilitate a DNA and Tissue Bank used by research labs throughout the world.
  • Manage a Patient Registry for clinical drug trials and other research.
  • Offer free genetic testing for families.
  • Provide recruitment, consultation, and strategic partnerships for clinical trials and other research.
  • Host an international CCM Mouse Model database.


  • Create a network of recognized CCM Centers of Excellence around the United States.
  • Provide a supportive community for patients and their families to connect 24/7 through support groups and online forums.
  • Publish a comprehensive Patient Care Guide for those affected by CCM and their families.
  • Educate patients, their families, researchers, and clinicians on treatment options and symptoms including through a Patient-Expert Certificate Program.


  • Introduce and advocate the CCM-CARE Act to speed the development of treatment options, save lives and save countless dollars in health spending.
  • Advise and collaborate with CCM patient groups worldwide to combine forces for our work toward a cure.