Sturge-Weber Syndrome Research

sturge weber syndrome research sturge-weber-syndrome-research

Game-changing Discovery of Gene Mutation that Causes Sturge-Weber Syndrome, Port-Wine Stain Birthmarks Offers New Hope

May 8, 2013

Kennedy Krieger Researchers Pinpoint Genetic Cause of Rare Disease and Common Birthmark

Baltimore, Md. -- In new findings published today in the New England Journal of Medicine (Epub ahead of print), researchers from the Kennedy Krieger Institute reveal the discovery of the cause – a genetic mutation that occurs before birth – of Sturge-Weber syndrome (SWS) and port-wine stain birthmarks. SWS is a rare disorder affecting approximately one in 20,000 births, while port-wine birthmarks are more common, affecting approximately one million individuals in the United States.

Bands On The Bay 2013

Apr 28 2013 - 1:00pm - 6:00pm

Herrington on the Bay
7151 Lake Shore Drive
Rose Haven, MD 20714

About This Event:

Bands on the Bay is an annual benefit concert and family festival held at Herrington on the Bay in Friendship, Maryland. This event is organized by friends and family to honor Jenna Heck, who has been diagnosed with Sturge-Weber Syndrome, a disorder characterized by a facial birthmark and neurological abnormalities. Funds raised from this event benefit Kennedy Krieger Institute's Hunter Nelson Sturge Weber Center to support research and treatment of the disorder.

Signs of a Syndrome

Allison

Foreman

Kennedy Krieger Center Focuses on Improving Identification of Rare Sturge-Weber Syndrome

Kyle Watson with His Mom Colleen The day Colleen Watson delivered her son Kyle was one of the happiest days of her life.