One of the strengths of the Angioma Alliance is that it brings together a really diverse group of people. Our lives are affected by angiomas in one way or another but we aren’t all the same. We live all over the country and 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 one angioma, others many. Some of us have had surgery, others have decided not to, and others are still thinking about options.
Angioma Alliance helps us to set aside our differences to 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 the greater 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 what groups may want to form and become what we are calling Action Group. As examples, the groups could focus on a particular problem, such as brainstem lesions, or a location, such as New Mexico.
Our first group will be the CCM3 Action 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, Angioma Alliance President, will be working within this group to start initiatives that are specific to those with the CCM3 mutation, including development of a CCM3 clinic.
The Board is interested in hearing your suggestions and needs. Please send me your ideas for other Action Groups. Angioma Alliance, the larger group, 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.
Chair, Angioma Alliance Board of Directors