Hunter Nelson Sturge-Weber Syndrome Center

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A Medical Breakthrough Uncovers the Cause of SWS

A Medical Breakthrough Uncovers the Cause of SWS

Groundbreaking research at Kennedy Krieger revealed the genetic cause of SWS, offering families the promise of new treatments for the first time.

Research: Leading the Way Toward New Treatments

Research: Leading the Way Toward New Treatments

Dr. Comi and her team of lab researchers are investigating novel drugs and targeted therapies to treat Sturge-Weber syndrome.

Our Team: Advancing Research and Treatment for SWS

Our Team: Advancing Research and Treatment for SWS

Our team of clinicians and researchers collaborate to offer comprehensive care and the latest in treatment for our patients.

"Running the Coast for a Cure"

Al DeCesaris chronicles his adventure to raise awareness & funds for Sturge-Weber syndrome in his new book, “Running the Coast for a Cure.” Get your copy!

Sturge-Weber syndrome is a rare disease where abnormal blood vessels in the brain, skin and eye can cause seizures, paralysis, strokes, migraines, learning problems, vision loss, and other health issues. 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 Institute are 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 Click, Alex Zaman, and Matthew Wanger to read their inspiring stories and find out why they give.

 
Lizzie Click

Lizzie Click

"Lizzie is eager to see the recent discovery of the genetic cause of Sturge-Weber Syndrome translated into improved treatments, a better quality of life, and ultimately a cure."

 
Alex Zaman

Alex Zaman

"We hope you will consider supporting Dr. Comi and others who have dedicated themselves to unraveling SWS so that Alex will have a bright future."

 
Matthew Wanger

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.

Help Children with Sturge-Weber Syndrome

Helpk Kids with Sturge-Weber Syndrome

Give to Sturge-Weber Syndrome research and help children enjoy fuller lives through improved diagnosis, care, and education.

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Sturge Weber Fundraising Thermometer

Hunter Nelson

Institute Discovers the Cause of Sturge-Weber

To learn more about our recent discovery View our press coverage

Dr. Comi's Updates

Dr. Comi announces research findings, posts important information, and answers questions of general interest to families living with Sturge-Weber syndrome. 

SUBMIT A QUESTION FOR DR. COMI

Sturge-Weber Center Events

Fall 2017:

Tropical Realty Charity Golf Tournament

More information to come!
 

 

Publications

Read inspiring stories, news and updates about the Institute's patient care, research, special education, professional training, and community programs.