Make no mistake: Cavernous angiomas suck. But your life, well, it can still be very okay.
Tuesday, November 1, 2011
The Angioma Alliance blog posted recently about needing feedback and support regarding action groups. An excerpt:
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.
It's an interesting post, and an even more interesting concept. I hope you check it out.