The Sturge-Weber Foundation (SWF) is an international 501 (c ) 3 not-for-profit organization that offers family support, provides learning opportunities and fosters research for individuals diagnosed with Sturge-Weber syndrome or birthmark related conditions as well as their caregivers and healthcare providers. The SWF also advocates on your behalf with umbrella organizations, insurers, educators, employers, as well as on the state and federal level.

Our commitment is to bring together everyone impacted by the diagnosis and to help them through the challenges they face every day while we raise awareness in the medical, research and advocacy communities. The syndrome, which affects individuals and their families worldwide, to date has an unknown cause but with your research participation hope is on the horizon for a cure. Newly diagnosed families or those individuals wanting to connect and network can get connected, click here.

As part of the accelerated research mission, in 2011 The Sturge-Weber Foundation and our scientific and technical partners began development of a comprehensive patient registry for Sturge-Weber syndrome and Port Wine Birthmark patients. This registries corpus of data was derived from patient data collected and stored on a server for almost 25 years.

The purpose of this registry is to provide a mechanism for communication between the research community and patients. For the research community, the registry provides a tremendous resource to aid in the recruitment of participants for research projects and clinical trials. For patients, the registry provides an opportunity for involvement in research to help in the process of developing a cure for Sturge-Weber syndrome and birthmarks.

The Sturge-Weber International Registry Team

• Matt Shirley, PhD – Chief Scientific Officer, The Sturge-Weber Foundation, PA
• Kyle Brown – Founder & CEO, Patient Crossroads, Inc., CA
• Karen L Ball – President and CEO, The Sturge-Weber Foundation, NJ

The Sturge-Weber Foundation Centers of Excellence

The SWF has established 10 Centers of Excellence in cities throughout the USA.

These Centers 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).
Each Center is staffed by a team of specialists who collaborate in the evaluation and management of each patient. This team approach ensures the individual's treatment plan is carefully developed and coordinated.
According to Karen Ball, CEO, "The SWF recognizes the collaborative care received at the Centers plays a key role in improving the quality of life for individuals living with port wine birthmark conditions. Together patients, dedicated physicians and the SWF will increase the pace of discovery."

To reach individuals listed below, contact the COE directly or contact Julia Terrell at jterrell@sturge-weber.org for more information.

CALIFORNIA
IRVINE - University of California - Irvine
Beckman Laser Institute and Medical Clinic

SAN DIEGO - Rady Children's Hospital - San Diego
SAN FRANCISCO - University of California - San Francisco
Hemangioma & Vascular Clinic

COLORADO
DENVER - University of Colorado Health Sciences Center/Children’s Hospital

MASSACHUSETTS
BOSTON - Boston Children’s Hospital
Dept of Neurology

MICHIGAN
DETROIT - Detroit Children’s Hospital
Dept. of Pediatrics, PET Center

NEW YORK
New York City - New York University Medical Center
NYU Comprehensive Epilepsy Center

OHIO
COLUMBUS - Columbus Children’s Hospital 

PENNSYLVANIA
PHILADELPHIA - Wills Eye Institute
Thomas Jefferson Medical Center

TEXAS
HOUSTON - Texas Children's Hospital