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Kristen Lewis' Fundraiser:

Malibu Angioma Alliance Walk

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BENEFITING: ANGIOMA ALLIANCE

ORGANIZER: ANGIOMA ALLIANCE

Kristen Lewis

THE STORY:

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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RAISE/DONATE $35 MINIMUM AND RECEIVE A FREE TECHNICAL T-SHIRT!

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DOWNLOAD SAMPLE ASK LETTER & SPONSORSHIP OPPORTUNITIES HERE!


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.

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To This Fundraiser

$400

MONEY RAISED
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  • Daria Gledhill

    $100

  • Kathy Wyer

    $50

  • Kelli Schroeder

    $100

  • Revo Academy

    $100

  • Emma Wilkins

     

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40% Raised of $1,000 Goal

Fundraise for this Campaign

The Team: $5,001 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

ANGIOMA ALLIANCE

Amount Raised

$2,525

 

25% Raised of $10,000 Goal

Fundraiser Title

Kogan Family

Amount Raised

$1,216

 

122% Raised of $1,000 Goal

Fundraiser Title

Kristen Fowler

Amount Raised

$455

 

46% Raised of $1,000 Goal

Fundraiser Title

Yrigollen Family

Amount Raised

$405

 

81% Raised of $500 Goal

Fundraiser Title

Kristen Lewis

Amount Raised

$400

 

40% Raised of $1,000 Goal

Donor Comments

Emma Wilkins

Emma Wilkins

10 months ago

Revo Academy

Revo Academy

DONATION: $100

10 months ago

Kelli Schroeder

Kelli Schroeder

DONATION: $100

10 months ago

Kathy Wyer

Kathy Wyer

DONATION: $50

10 months ago

Daria Gledhill

Daria Gledhill

DONATION: $100

Kristen, you're a source of love, warmth and kindness that is much needed in this world. Can't wait to walk with you! 11 months ago