Cavernous angioma (also known as cavernous malformations or CCM) are clusters of abnormal blood vessels in the brain or spinal cord that affect up to three million people in the United States. More than 30 percent of those with CCMs will suffer symptoms during their lifetimes, including seizures, stroke symptoms, hemorrhages, headache and sometimes death. CCM was determined to be the cause of death for 38-year-old Olympic champion sprinter Florence “Flo-Jo” Griffith-Joyner in 1998. “We still do not know the cause of the illness, what triggers bleeding or how to remove a CCM without brain surgery,” notes Angioma Alliance board member Kandance Weems Norris, MBA, JD.
Angioma Alliance, an all-volunteer network dedicated to improving the lives of those affected by cavernous angioma, provides support for CCM patients and their physicians by; increasing public awareness, facilitating the exchange of information between doctors and researchers, and coordinating a DNA/tissue bank and patient registry.
“Raising awareness in the Black and Latino community is of significant importance,” says Weems Norris. “Latinos are disproportionately affected by the illness through a genetic mutation occurring in the Latino population. Blacks tend to be misdiagnosed, often due to lack of access to adequate healthcare and [the] lack of physician knowledge about the disorder.”
Angioma Alliance will host the fifth Angioma Alliance Family Conference on April 3-5, 2009 at the Hilton Fisherman’s Wharf in San Francisco. The first annual 5K Run/Walk will be held on Sunday, April 5 at 2:00 p.m. at the Marina Green.
For more information or to make a donation, please visit www.angiomaalliance.org.
