Get Involved: Start an Action Group!

One of the strengths of Angioma Alliance is that it brings together a diverse group of people. Our lives are affected by cavernous angiomas in one way or another but we are all different. We live all over the country and around the world. We are men, women, and children of all different ages and backgrounds.

Some of us struggle with headaches, others have had strokes. Some of us have a single angioma, others have many. Some of us have had surgery, others have decided not to, and
others are still thinking about options.

Angioma Alliance helps us set aside our differences and work together toward common goals:
seeking a cure, finding peer support, answering research questions and helping each other to live full lives.

The Board of Directors fully supports this solidarity and believes that we are stronger when we are together with our shared diagnosis of cavernous angiomas. However, we also think that
there is a place for creating more specific groups, within Angioma Alliance, for those who have particular concerns and interests. In this way, the organization can meet the needs of all
our members in ways that serve each person best.

At this time, we are excited to see which groups may want to form and become what we call action groups. Groups could focus on a particular problem, such as brainstem lesions, or a
specific location, such as New Mexico.

Our first group will be t h e C C M 3 a c t i o n group. Individuals with the CCM3 mutation
(which can run in families) tend to have an aggressive form of the disease and may have
other associated medical problems. Connie Lee, will be working within this group to start initiatives that are specific to those with the CCM3 mutation, including the development of a CCM3 clinic.
The Board is interested in hearing your suggestions and needs. Please send me your ideas for other action groups at ssukalich@angioma.org.

Angioma Alliance is here to support all of our members’ needs; from a single person,
to an action group, to the majority. I look forward to hearing from you.

Sara Sukalich, Chair,
Angioma Alliance Board of Directors