Presymptomatic Sturge-Weber Syndrome Treatment Reduced Seizures for Young Girl
Quinnlyn Walters is a bright, bubbly, and active 8-year-old. She loves reading, riding horses, swimming and softball, karate, Star Wars, and spending time outside with
The Sturge-Weber Foundation
The Sturge-Weber Foundation
The Sturge-Weber Foundation, founded in 1987, is a 501(c)(3) non-profit organization dedicated to serving those affected by Sturge-Weber syndrome (SWS), Port-Wine Birthmarks, Klippel-Trenaunay syndrome, glaucoma, and seizures through education, research, caregiver care, and patient advocacy. The SWF partners with dedicated physicians and researchers to develop new treatments and search for a cure.
In 2013, with the help of a team of researchers, we discovered the gene that causes SWS. The discovery of the GNAQ somatic mutation was made possible by the SWF laying the groundwork through years of advocacy on the Hill and the National Institutes of Health, exhibiting at academy conferences, spreading awareness and engaging researchers as well as using your critical donations to fund all that and research grants.
Today, we have a team of over 25 Clinical Care Network centers that provide the comprehensive care necessary for treating adults and children who have a port wine (PW) birthmark, Sturge-Weber syndrome (SWS), or Klippel-Trenaunay (KT).
SWS may be a rare disease, but together we are stronger when we unite!
Together, we UNITE for a bigger voice.
Together , we UNITE for a lighter workload.
Together, we UNITE to learn more and achieve greater results.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Resources & Support
Additional links
The Branching Out Magazine is a quarterly publication produced by the Sturge-Weber Foundation and is available for download.
Patient Stories that will inspire and offer hope!
Official SWF Brochures are available to download and free to print and share. Including Emergency Guide in English and Spanish, Color Me Different coloring book, research and general information brochures, and more!
Our resource materials, will provide educattion on various topics.
Our Programs for Professionals is designed to bring together researchers and physicians to learn and collaborate on all SWS-related topics.
Patient Worthy Posts on the Sturge-Weber Foundation
Four-Year-Old Boy Tackles Sturge-Weber Syndrome Through Presymptomatic Treatment
At four and a half years old, Tucker Lewis is thriving. He loves playing with his friends, riding his bike outside, and watching the Atlanta
Rare Classroom: Sturge-Weber Syndrome
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on
Mom and Friends Run for Sturge-Weber Syndrome Awareness
What would you do to support your child? Would you take on a daunting 100 kilometer (62 mile) run? According to the Daily Record, a
New Partnership to Assess an Experimental Treatment for Sturge Weber Syndrome
According to a story from Gurufocus, the precision medicines company IDEAYA Biosciences, Inc. and the Boston Children’s Hospital have recently entered into a Sponsored Research
Experimental Technology Sheds Light on Rare Disease
Sometimes, the only thing a rare disease needs is for technology to catch up with the times and save the day. Recently, this came in
