When I was nine months pregnant with my second child, my feet went numb. The doctors were confident that the baby was pressing on a nerve and that once she was born, my symptoms would disappear. But days after delivery I had lost nearly all function from the waist down. I was nursing my baby girl as a neurologist pointed to my MRI image and said “tumors," "operate" and "radiation.” I felt hollow as the doctor spoke, thinking I would soon be leaving this world and my husband, infant and three year old son. We left that doctor’s office and went immediately to the emergency room where I was to be admitted and where the words “cavernous angioma” were uttered for the first time. I was fortunate to have a surgeon who was familiar with the illness and took time to explain it to us, but all I heard was “not cancer.” I would have a chance at life. I had emergency surgery to remove a hemorrhaging lesion from my spinal cord and after extensive physical therapy I recovered nearly all of my motor function. I am left with extensive sensory damage and neuropathic pain but I am alive and I couldn’t be more grateful. Subsequent genetic testing revealed that CCM1 is responsible for the multiple lesions remaining in my brain and brainstem. I didn’t ask for this illness and I don’t want it, but having it helps me appreciate every moment I am alive. I hold my kids tighter, I linger watching the ocean and I say thank you a lot. I am absolutely determined to see a cure for this disease and I will do anything I possibly can to help make this happen. Cavernous angiomas are mulberry-shaped leaky blood vessels in the brain and spinal cord that can hemorrhage causing potentially devastating stroke and seizure. One in every 500 people has a cavernous angioma but most people don't know until it bleeds. Brain surgery is the only current treatment option. Angioma Alliance, founded in 2002, is the premier patient and research organization for the illness. Funds raised will go directly to supporting the search for a drug treatment and cure. Please donate, every dollar counts! Thank you sincerely, Kristen
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On Saturday, October 21, 2017 at Zuma Beach our 2nd Annual Angioma Alliance Walk will take place 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.