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 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 and a trial of oral sirolimus for cognitive impairments in Sturge-Weber syndrome. Dr. Comi has also recently carried out a clinical trial of Epidiolex for cognitive impairments in Sturge-Weber syndrome as well.
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, ophthalmologists, neuropsychologists, physical therapists, occupational therapists 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:
- 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
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.
"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.
Ask Dr. Comi
Would you like to receive Dr. Comi's updates by email? Do you have a topic or question you would like to see addressed with a future Update?
Please click the link below to contact Dr. Comi. She will be in touch through email with a response. Selected questions will be featured on Dr. Comi's Updates page.
Related Materials and Information:
The Hunter Nelson Sturge-Weber Center Factsheet (PDF)
Multidisciplinary Clinic Information (PDF)
Occupational Therapy Services for SWS Patients Factsheet (PDF)