Angioma Alliance is a rapidly growing patient-directed network founded in 2002 and dedicated to improving the lives of those affected by cavernous angioma. There are many needs that we have been addressing together.
First and foremost, people diagnosed with cavernous angiomas have needed more information and a way to talk to others who have the illness. Physicians are frequently unfamiliar with the disease. Internet information has been scarce and technical, and until Angioma Alliance there had been no active internet forums. Many of us have never known anyone else with the illness. Angioma Alliance’s website, peer support program, patient literature, family conferences, and medical convention exhibits have been providing vital information and opportunities for support to those of us affected by cavernous angioma and to the physicians who care for us.
Second, we have needed to increase if the public awareness of cavernous angioma. Up to 1.5 million people in the United States have at least one cavernous angioma. Track star Florence Griffith Joyner died as a result of this illness. Former Houston Astros manager Larry Dierker had a public seizure followed by a craniotomy. Alberto Contador suffered a seizure during a cycling race, had brain surgery to remove a cavernous angioma, and went on to win the 2007 and 2009 Tour de France. Yet, the name “cavernous angioma” or “cavernous malformation” is not recognized by the vast majority of people, including most medical professionals. Increased public awareness may lead to earlier diagnosis for many. It can increase support and understanding of the illness from those not directly affected.
Third, we have needed a way to connect with the research community. Many essential questions remain to be answered about the management, treatment and prevention of cavernous angiomas. We would like answers to research questions sooner rather than later. We want to know why cavernous angiomas bleed, and how we can reduce our risk of hemorrhage or seizure. We need ways of treating cavernous angiomas that don’t involve brain surgery. We wonder whether there will ever be a cure for the illness. We would like to see the end of the transmission of this illness from generation to generation. Angioma Alliance has become the major source of referrals to genetic research studies. We host a DNA/Tissue Bank and Clinical Database that supplies resources to researchers to expedite their work. We host an annual Scientific Workshop that brings together researchers from around the world.
Angioma Alliance can be as active and effective as those who choose to volunteer. If you or a family member or friend is affected by cavernous angioma, please consider joining us in our effort. Our Volunteer Interest Form allows you to tell us how you'd like to help.