The groundbreaking identification of the gene that causes Sturge-Weber syndrome was discovered at the Kennedy Krieger Institute in 2013 by Dr. Anne Comi and her collaborators. 

This discovery has drastically revolutionized our medical understanding of Sturge-Weber syndrome and and laid the groundwork for clinical trials. Since that time, Dr. Comi has carried out a successful clinical trial of Epidiolex for refractory seizures in Sturge-Weber syndrome recently published in Pediatric Neurology, and is currently overseeing a trial of oral sirolimus for cognitive impairments in Sturge-Weber syndrome. 

The faculty and staff of the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Instituteare dedicated to providing the highest quality of comprehensive care for patients with Sturge-Weber syndrome. Children with Sturge-Weber syndrome require skillful management by an expert team including neurologists, dermatologists, endocrinologists, ophthalmologists, neuropsychologists and medical rehabilitation specialists. Simultaneously, we advance knowledge of Sturge-Weber syndrome through research that spans basic science, translational research and clinical trials, and we teach and train the pediatricians of tomorrow in the art and science of caring for patients with rare diseases.  

The goals of the Hunter Nelson Sturge-Weber Center are to:

  1. Provide comprehensive clinical care of patients with Sturge-Weber syndrome
  2. Educate patients, families, and physician medical educational services about Sturge-Weber syndrome
  3. Conduct clinical and translational laboratory research to improve future treatment for Sturge-Weber syndrome

Our ability to further advance key areas of Sturge-Weber syndrome research depends on financial support from individuals who understand and believe in our mission. This support will enable us to achieve the best for our patients through scientific discovery, clinical care, and education and training.

With the recent discovery of the cause of SWS, we have begun to investigate new treatments. We urgently need your support to develop and test these treatments that have the potential to radically improve the lives of those living with SWS.

Every gift we receive will help us advance our mission. Your generosity will directly impact patients and families, and the medical community that seeks to help them. Make your gift now!


Create a fundraising page to support the center

Personal Fundraising Pages are a great way to support the Center. Philanthropy helps us continuously expand what is possible for children with Sturge-Weber syndrome through research that informs new management protocols and treatment options. Please check out the pages by Lizzie ClickAlex Zaman, and Matthew Wanger to read their inspiring stories and find out why they give.

Matthew Wanger

"Matthew has overcome many hurdles in his journey with SWS. Please support research for better treatments for SWS and to prevent medical and developmental problems from it."

Learn more about creating a fundrasing page for the Hunter Nelson Sturge-Weber Center.

The Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute was founded in Baltimore, Md in 2002 through Kennedy Krieger Institute’s University Center for Excellence in Developmental Disabilities Education, Research and Service (UCEDD) in collaboration with Johns Hopkins University.

Related materials and information

The Hunter Nelson Sturge-Weber Center Factsheet (PDF)

Occupational Therapy Services for SWS Patients Factsheet (PDF)