Most of you know I have a rare illness called Cavernous Angioma, and have been diagnosed with the CCM1 mutation also known as the "Common Hispanic mutation". This year I have continued my enrollment with the University of New Mexico to find a cure for this illness. The only current treatment for this illness is brain surgery. There is no drug treatment as of yet to prevent these lesions from bleeding, and with the common Hispanic mutation I will continue to form more as I age. We need your support to help Angioma Alliance continue to improve the quality of life for those affected with this illness. Having the hereditary form of this illness means that my children have a 50% chance of having it. Two of my three daughters have been tested and are negative to the illness. This year I have met large families in New Mexico that are not as fortunate as I am.
When I was asked to walk in Orange County this year by Stephanie Alband, Development Director for Angioma Alliance, I felt it was time to check a bucket list item off. “Lets walk Flo-Jo Park in Mission Viejo and do you think we could call Mary Joyner to sing The National Anthem”, I had asked. Few days later Stephanie said, “YES" to everything. Flo-Jo passed away from complications of the illness at the age of 38. She was my favorite athlete of all time.
I have learned much about the brain and life during this diagnosis. We all tend to take the brain for granted. The brain permits us to think, move, remember, breath and love. Any diagnosis is devastating and should never be minimized. Help us find a cure so that surgery is the last option. Come walk with us at Florence Joyner Olympaid Park 22761 Olympiad Road Mission Viejo CA. Meet FloJo and Al's daughter Mary Joyner and many more. This event will be epic!
Malibu Angioma Walkers Walk date is October 21, 2017 @ 9am. Looking forward to the two walks this year as we educate and impower those affected with this illness.
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