Angioma Alliance

Are you 1 in 500?  A cerebral cavernous angioma is an abnormal blood vessel in the brain that can hemorrhage and cause stroke and seizure. One in every 500 people has at least one cavernous angioma, although most don't know until they've had a hemorrhage. Olympic track star Florence Griffith Joyner passed away from a seizure caused by a cavernous angioma. Young Red Sox hopeful Ryan Westmoreland had his career end before it even began because of a cavernous angioma. Even children aren't immune and the impact on their lives can be devastating.

There is no treatment to prevent hemorrhage. Brain surgery, when it's even possible, is the only option after a hemorrhage to remove a cavernous angioma. Some people have a genetic form of the illness that causes them to have many, many cavernous angiomas, dramatically increasing their chance for a brain bleed.

Angioma Alliance was founded in 2002 as the only advocacy organization connecting patients, their families, researchers, and physicians. We support research with a patient registry, a DNA/Tissue Bank, and annual international scientific meetings. We provide a home for patients through our one-on-one peer support program, extensive information on our website, and multiple social media platforms. 

The American organization has inspired the creation of sister organizations in the United Kingdom, Canada, Italy and Brazil. 

Cerebral cavernous angiomas are moving closer toward a drug treatment - a medication that will reduce the risk of hemorrhage and stop the development of more lesions in those with the genetic form. Drug studies are underway in mice and human studies are not far behind. We need your help now, more than ever, to drive research and prepare for clinical trials. Please give generously.