Nicole Clayton's Fundraiser
Love in action wins!
Join me and help make a difference, please give today.
Amy Shelton
"Praying that a cure is discovered soon. Sending love to Mary Ellen and you all. ❤️"
$10
LaJuanna Beasley
I donated in support of this campaign.
$50
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Hallie Hylander
"In honor of Ben and ME! Much love to yall! The Hylanders & Woodwards"
$10
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Darla Clayton
"Love to the other Clayton's!"
$10
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Patricia Taylor
"In honor of Ben and Mary Ellen Clayton."
$50
Love wins. It always does. Please give our family and our Cerebral Cavernous Malformations community some love and support through prayer, reading up about the way CCM overall and how how CCM3 (one of the genetic types of this disease) affects our family, and giving to the alliance if you are able to give financially and would like to. With rare disease, it is much harder to get the funding for research and medical trials than it is for well known and more common medical issues. We have to rely on these kinds of campaigns and grass roots efforts to spread the word and advocate.
A day in the life of anyone with this disease is tough either for knowing what could happen or for the experience of what is already happening. For those with this disease, common symptoms are headaches, seizures, balance issues, changes in cognition, or a host of other things. For Ben and Mary Ellen, with CCM3, we know the typical pattern is to develop 2-4 new lesions per year. They grow, leak/ ooze, or hemorrhage, causing a great range of symptoms depending on which location of the brain or spine it has decided to act up in at that time.
I smile in wake and in sleep at the thought of all the goodness around us, at how good we have it, because neither Ben nor Mary Ellen have yet had brain surgery. Mary Ellen has had two symptomatic bleeds that we know of for sure (left frontal inferior gyrus and one somewhere close to her motor strip), but this has been a much calmer year brain-wise than previous. The twins have no major health diagnoses. However, Mary Ellen has had two surgeries already—one in Boston to de-tether her tethered spinal cord and another at St. Jude to remove and biopsy what turned out to be a follicular adenoma with two DICER-1 variants found incidentally on her spine MRI. In both of those cases, she had THE BEST surgeons and the best care with great outcomes.
Join me in supporting real change. Let’s support good in the world and make a difference. Help us for ANGIOMA ALLIANCE
Just a small donation will go a long way to helping me meet my goal for ANGIOMA ALLIANCE