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Sturge-Weber Foundation

Legacy Leaders

Hello, game-changing Legacy Leaders! We are calling on our warriors who are passionate supporters to step up and plant seeds of hope for future generations!
US$4,210
raised of US$60,000 target
by 13 supporters
RCN 742485813

Story

Calling all Legacy Leaders,

Our quest for a cure for Sturge-Weber Syndrome is an epic marathon, fuelled by honest answers, and the determination to conquer the battle! đź’Ş Research may be slow, but with your support, we'll sprint toward that finish line and make the hurdles a thing of the past! This is our WHY, our mission, our reason! Unite with us today and let's conquer the world, one donation at a time.

Since 1987, we have increased the quality of life for those with Sturge-Weber syndrome, Klippel-Trenaunay syndrome, Port-Wine birthmarks, Glaucoma, and seizures.

WE ARE STRONGER WHEN WE ARE UNITED TO LEAVE A LEGACY FOR THE FUTURE.

A Legacy Leader for The Sturge-Weber Foundation is someone who is planting seeds for a fruitful tomorrow and receives a gift. (With a donation of $250–$1,000+ – see below for details.)

A Research Legacy Leader is someone who is committed to supporting research efforts to find a cure and therapies.

A Webster's World Legacy Leader is someone who is committed to offering support and comfort to those undergoing laser surgeries.

A Legacy Leader is someone who wants to support educational efforts through mini-summits, mental health chats, and a new SWF App.

A Stock Legacy Leader is someone who donates securities to our foundation.

ONE IN 50,000 DOESN'T SEEM LIKE A LOT UNTIL YOUR CHILD IS THE ONE.

The SWF was founded by Kirk and Karen Ball. They began searching for answers after their daughter, Kaelin, was diagnosed with Sturge-Weber syndrome at birth.

We typically first met families when they were struggling to navigate a roller coaster of emotions and questions that accompany SWS. The Sturge-Weber Foundation was born out of the necessity to find information on this rare disease.

Today, we know the cause of SWS is the somatic mutation in GNAQ somatic mutation on chromosome 9q21. In 2013, the GNAQ gene mutation was researched and discovered by our CSO, Matthew Shirley, PhD working in Jonathan Pevsner’s, PhD lab. The SWF supports its work to understand how these mutations cause both SWS and Port-Wine birthmarks in order to identify potential treatments.

Although we found the cause of SWS, there is still much more work to do!

Just like in the beginning, we are here for you—for a reason, a season, or a lifetime.

When you support The Sturge-Weber Foundation you are making a difference to continue supporting families and patients while investing in important research and awareness efforts.

BE A LEGACY LEADER TODAY FOR EDUCATION, ADVOCACY, AND RESEARCH!

INSTRUCTIONS: Indicate your Legacy Leader gift choice in the message section when checking out. If the message is left without a choice, we will email you privately about your gift.

About the charity

We exist to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port Wine Birthmark conditions. We support them with collaborative education and advocacy in tandem with translational research as we promote effective management and awareness.

Donation summary

Total raised
US$4,210.00
Online donations
US$4,210.00
Offline donations
US$0.00
Direct donations
US$4,210.00
Donations via fundraisers
US$0.00

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