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.
The Sturge-Weber Center at Kennedy Krieger Institute was founded in 2002 through Kennedy Krieger’s University Center for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD) collaboration with Johns Hopkins University.
Since its foundation, the center has evaluated, diagnosed and treated hundreds of patients with Sturge-Weber syndrome from around the world. Children with Sturge-Weber syndrome require skillful management by an expert team including neurologists, dermatologists, ophthalmologists, neuropsychologists, physical therapists, occupational therapists and medical rehabilitation specialists.
Simultaneously, the Hunter Nelson Sturge-Weber Center advances knowledge of Sturge-Weber syndrome through research that spans basic science, translational research and clinical trials, and teaching and training the pediatricians of tomorrow in the art and science of caring for patients with rare diseases. 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. Learn more about the center’s research initiatives here.
The Goals of the Hunter Nelson Sturge-Weber Center are to:
- Provide comprehensive clinical care of patients with Sturge-Weber syndrome
- Educate patients, families, and physician medical educational services about Sturge-Weber syndrome
- Conduct clinical and translational laboratory research to improve future treatment for Sturge-Weber syndrome
Tribute to Hunter Nelson
Hunter Nelson was diagnosed with Sturge-Weber syndrome (SWS) when he was seven months old. On May 29th, Hunter passed away unexpectedly due to a severe seizure. In honor of Hunter's memory and with the generous support of the non-profit founded by his parents, Hunter's Dream for a Cure, the Sturge-Weber Center at the Kennedy Krieger Institute was renamed the Hunter Nelson Sturge-Weber Center in 2005. This year marks the Center's 20th anniversary.
In Memory of Hunter Andrews Nelson
November 5, 1999 - May 29, 2005
The dream for a cure lives on...
Hunter, your charming innocence and spirited determination in the face of adversity
inspired us all to seek better answers.
Your absence leaves us saddened and bereft.
Nevertheless, we commit ourselves to the path that lies before us,
for the sake of all children with Sturge-Weber syndrome.
We will not forget you.
Hunter Nelson Sturge-Weber Syndrome Center Faculty and Staff
Support Our Work
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.
Donate now! Create a Fundraising Page
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Please click the link below to contact Dr. Comi. She will be in touch through email with a response.
