I really wanted to live the rest of my life with no more episodes, no more emergency surgeries, no more brushes with death because I have this disease. I wanted to be able to tell the story of my miraculous recover from a hemorrhage in my spinal cord that came close to rendering me paralyzed from the waist down; How nurses pumped milk from my breasts when I was flat on my back in the ICU so that I would still be able to nurse my week old baby when I saw her again. But because I live with this disease, my future, and often my present, is uncertain. With no warning, last December brought another emergency surgery. I am now on the other side of this surgery too, with new miracles to share—neighbors and friends wrapping Christmas presents for my children and bringing holiday feasts; Friends from Angioma Alliance reaching out in the most touching and personal ways because they truly understand the path I walk; A surgeon who answers my emails with calls back. A new reminder to be in every day as fully as I can—smell my daughter’s hair, feel the luxury of a shower, delight in my son’s tenacity, hold my husband’s hand. I know that I am lucky, two major surgeries and here I am. I have nerve pain, yes, fear, yes, but they are no match for my gratitude and love. The role Angioma Alliance plays in the lives of patients living with CCM really can’t be overstated. Not only does Angioma Alliance support patients when we are ill, but because it drives research, it gives us hope that one day soon there will be a drug treatment. I truly don’t want to have to add another chapter to my CCM story. Thank you for your financial support, know that every dollar really does have an impact.
Registration is Free!
Please join me on Sunday, October 21, 2017 at Zuma Beach for our 4th annual walk to benefit the non-profit organization Angioma Alliance, the only patient and research organization supporting those affected by cerebral cavernous malformations (CCM). We invite you to take part in this community-driven, family-friendly event. Highlights include food and refreshments, raffle, auction, entertainment, and many family-friendly activities. Angioma Alliance supports people affected with CCM, who develop abnormal blood vessel lesions in the brain that can hemorrhage and cause strokes and seizures in both children and adults. People with hereditary forms of the illness can develop many cavernous angiomas in a lifetime. Currently, brain surgery is the only treatment. Angioma Alliance is working with researchers to develop medications that will prevent hemorrhage and prevent development of more lesions. Funds from our walk will be used to support Angioma Alliance’s DNA and Tissue bank, a patient registry, an international scientific meeting, and the development of clinical centers of excellence. We are driving research toward a cure! Sponsorship opportunities are listed on the following page. Angioma Alliance is a 501(c)3 non-profit organization. All donations, including gift-in-kind donations, are tax deductible to the extent allowed by law. Our federal EIN is 02-0600697. Collectively, our efforts result in a nationwide community bound together by cavernous angioma, but we don’t let that define us, it only empowers us! For more information about cavernous angioma and Angioma Alliance go to www.angioma.org.