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VASCULAR BIRTHMARKS FOUNDATION INC

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Nonprofit Overview

Causes: Health, Specifically Named Diseases

Mission: Provide support and informational resources for individuals affected by hemangiomas, port wine stains and other vascular birthmarks and tumors, and sponsored relevant research

Target demographics: families affected by a vascular malformation or related syndrome

Geographic areas served: the US with chapters in 13 other countries

Programs: annual conference and clinic, discussion forum, and referrals to experts.

Community Stories

2 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

I Give to VBF Because It Hurts.
The Vascular Birthmarks Foundation (VBF) directly connects families affected by a vascular birthmark with specialists who can help. What does that mean in reality?

My daughter Jaysa has been complaining that her legs hurt since she was three years old. The pediatrician told us it was from overuse as an active toddler. The school nurse said it was probably just growing pains. One night, when Jaysa was eight, I was massaging her leg because of more-than-usual pain when I noticed a thick bulge on the bottom of her left foot. An MRI revealed that she had a large venous malformation, a soft tissue mass of misshaped veins that she's had since birth, but didn't grow visible until now. It explained all the aching and limping she'd been doing for years.

Thank goodness for the Vascular Birthmarks Foundation (www.birthmark.org). While the local doctors were somewhat puzzled, VBF's network of doctors immediately knew what it was and how to treat it. She's had three surgeries by Dr. Robert Rosen to shrink the veins. Now, she can run and cheer with only a slight ache. This past March, Jaysa decided to donate her birthday gift money to the VBF in gratitude for all the help and guidance they gave. Little did we know that the giving would not end there.

Last week, we discovered that Jaysa has three more venous malformations, one in EACH knee and one in her left hand. These small tumors explain why her knees have been hurting since school started. The VBF was there for me again with advice and articles to help explain her condition.

In appreciation for all the resources the Vascular Birthmarks Foundation has to offer parents like me, I have recently asked to serve on the volunteer board of directors. I'm inspired to give my time and talent so that other kids don't have to hurt.

We want parents, pediatricians, and dermatologists to know to contact a VBF expert whenever they encounter a problematic vascular birthmark. It makes all the difference! www.birthmark.org

Review from #MyGivingStory

3

Board Member

Rating: 5

My son was born with a vascular tumor across the right side of his face. With he support and help of the VBF, I found experts in the field that would do the best thing for my son. I joined the VBF to continue the mission of help other patients and families needing up to date information and support.