Houston Angioma Alliance Walk
April 14, 2018
EVENT DATE: Apr 14, 2018
DEADLINE TO GIVE: Sep 30, 2018
FUNDRAISER SET UP DEADLINE: Apr 15, 2018
RAISE/DONATE $50 MINIMUM AND RECEIVE A FREE AWARENESS BRACELET & T-SHIRT!
On Saturday, April 14, at Bear Creek Park in Houston, TX, Jonathan & Brandy Ott and family will host a Houston 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.
Brandy and her family are honoring their son, Kelan. Here is Kelan's story.
Kelan was a healthy 10 year old boy who had just finished his first season of baseball. It was an early July morning when Kelan suffered a grand mal seizure in his sleep and stopped breathing. He was rushed to the emergency room where we were refered to a neurologist. A few weeks later we saw the Dr., and were told it was probably a one off thing. We were sent for an EEG and MRI. During the EEG, he had a absence seizure. We were told he had epilepsy. A few days later, he had a MRI and the Dr. called soon after and told us he had a cavernous angioma that has leaked. This is where his seizures are coming from. We had never heard of such.
Over the last year, Kelan has had multiple seizures, declined cognitively from them (having to learn to write again), has days he can't walk without falls, and is on over 2300 mg of medicine a day that are masking his seizures on a good day. He is at risk for a big bleed at any time, as well as stroke. His surgeon wants to remove it, but is afraid of stroke risk from the dry blood. However, the longer he has seizures the more his brain gets used to them. So, if he waits he can go from having a craniotomy to remove the malformation to having to go back and remove the entire temporal lobe. Brain surgery is the only cure. All of this from a tangled web of thin, vulnerable veins. --Brandy
Please join us on our mission to raise funds and awareness for people, like Kelan, affected by CCM by participating in this walk.
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 available.
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.