Sturge-Weber Syndrome (SWS)

Millions Around World To Observe Rare Disease Day

January 14, 2011
World Rare Disease Day on February 28, 2011

(Baltimore, MD) Kennedy Krieger Institute will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing World Rare Disease Day on February 28, 2011. On this day, millions of patients and their families will share their stories to focus a spotlight on rare diseases as an important global public health concern.

NIH Expansion of Rare Diseases Clinical Research Network to Include Kennedy Krieger Institute

October 8, 2009
Sturge-Weber syndrome researchers at Kennedy Krieger to take part in one of nineteen consortia

Baltimore, MD-The National Institutes of Health announced this week funding for 19 research consortia as part of an expansion of the Rare Diseases Clinical Research Network (RDCRN), including a Brain Vascular Malformation Consortium. Dr. Anne Comi and her colleagues in the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute have been funded to contribute to this consortium, which will be led by Dr. William Young at the University of California, San Francisco.

Rockin' for a Cause

March 12, 2010
Bands on the Bay to benefit Kennedy Krieger's Sturge-Weber Center

Baltimore, MD - Families will be rockin' and rollin' on the Chesapeake Bay at the annual Bands on the Bay event, Sunday, April 25. A music-filled afternoon for the entire family, Bands on the Bay will feature the Doug Segree Band; Orlando Phillips, Caribbean music steel drum musician and the former lead vocalist of the Caribbean music group Mama Jama; Jefe, solo acoustic act; and The Fitzmaurice Band. Guests will enjoy live music and great food and drink while raising money for a good cause-the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute.

Kennedy Krieger Research Update: The Hunter Nelson Sturge-Weber Center

April 15, 2009
New Insights into the Treatment of Patients with Sturge-Weber Syndrome

(Baltimore, Md) - Sturge-Weber Syndrome is a disease characterized by a facial birthmark, or "port wine stain," in association with abnormal blood vessels on the surface of the brain, glaucoma or both. Seizures, beginning often in infancy, are the most common symptom, followed by weakening or loss of the use of one side of the body (hemiparesis), vision impairments and delays in motor and cognitive skill development.

Rockin' On the Bay on April 26th

April 26, 2009
Bands on the Bay to benefit the Kennedy Krieger Sturge-Weber Center

Baltimore, MD - The Chesapeake Bay will be rockin' and rollin' at the annual Bands on the Bay event, Sunday, April 26. A music-filled afternoon for the entire family, Bands on the Bay will feature the Doug Segree Band and Orlando Phillips, the former lead vocalist of the Caribbean music group Mama Jama. NFL Pro Bowler and current New York Jets player Alan Faneca will make a special appearance while guests enjoy the live music and great food and drink.

Sturge-Weber Syndrome Center Offers Nation's Leading Treatment Approach For Children With Complex Disease

December 9, 2005
Center Provides Comprehensive Diagnosis and Treatment of Rare Disease Causing Seizures, Motor and Visual Problems and Cognitive Impairment in Children

(Baltimore, MD) - The Hunter Nelson Sturge Weber Center at the Kennedy Krieger Institute introduces a multidisciplinary team of specialists to children with this rare and debilitating disease. Directed by Dr. Anne Comi, the Center's unique combination of faculty, including specialists in neurology, epileptology, ophthalmology, dermatology, neuroradiology, rehabilitative medicine, endocrinology and psychiatry, is vital for researching and treating a disease that affects multiple bodily systems.

Bands On The Bay

March 21, 2006
Event to Raise Funds for the Kennedy Krieger Sturge-Weber Syndrome Center

(Baltimore, MD) - A special day of festive music on the waterfront will raise funds in honor of Jenna Heck, a toddler who was born with a rare condition called Sturge-Weber Syndrome. "Bands on the Bay" is an afternoon of exciting musical entertainment, fantastic silent and live auctions, and delicious food, beer, and wine.

Bands on the Bay 2010

The Chesapeake Bay was brought to life on Sunday, April 25, for the fifth annual Bands on the Bay event. Featuring the sounds of live music, silent and live auctions, and delicious food and drinks, Bands on the Bay is a fundraiser organized by friends and family to honor Jenna Heck, who was diagnosed with Sturge-Weber Syndrome, a disorder characterized by a facial birthmark and neurological abnormalities.

Sturge-Weber Syndrome (SWS)

To find patient care programs and faculty treating Sturge-Weber Syndrome at Kennedy Krieger Institute, please see the right-hand column below. Additional helpful information, including definitions, symptoms, Institute press releases, Potential magazine articles, and other resources outside the Institute, have also been provided for readers on this page.

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