Organization: Angioma Alliance

During the weekend of October 4-5, Angioma Alliance members and their supporters will be walking in their hometowns around the United States. From single families in their neighborhoods to large public walks attracting hundreds, these events bring members together for two common purposes: to raise awareness of the impact of cavernous angiomas on patients and to raise funds for research for treatments.

Cerebral cavernous angiomas cause disability and can be fatal, even in children. They are abnormal blood vessels in the brain that can hemorrhage, resulting in stroke and seizure. One in every five hundred people has a cavernous angioma although most will never know. Currently, the only treatment for a cavernous angioma is brain surgery. Researchers are working toward developing medications that will prevent hemorrhage and, for those with a hereditary form of the illness, prevent the development of new cavernous angiomas.

Angioma Alliance was founded by a mother, Connie Lee, in 2002 and remains the only patient organization in the United States serving this illness. The organization has multiple initiatives to support research. Angioma Alliance has established a DNA and tissue bank and a patient registry that provide access to these precious resources to researchers around the world. They organize the annual international scientific meeting for the illness, which allows researchers to share data and form collaborations. Now in its tenth year, the meeting can be credited as the incubator for much recent scientific progress. Angioma Alliance is raising funds currently to provide genetic testing to members and to establish a network of clinics in preparation for drug trials.

To learn more about a walk near you or to organize your own event, email info@angioma.org or message Angioma Alliance through Facebook.

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