Sturge-Weber Syndrome (SWS)

Bands On The Bay 2014

Apr 27 2014 - 1:00pm - 6:00pm

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

About This Event:

Families, friends and groupies are invited to boogie for a good cause at the ninth annual Bands on the Bay. This fundraiser for the Hunter Nelson Sturge-Weber Center at the Kennedy Krieger Institute will feature acoustic rock by the Doug Segree Band and Caribbean steel drumming by Orlando Phillips, former lead vocalist of Caribbean music group Mama Jama. The Washington Redskins Cheerleaders will also make a special appearance.

Sturge-Weber Syndrome and Port-Wine Stain Birthmarks: Identifying the Cause, Pursuing the Cure

by Martie
Callaghan
November 13, 2013
Researchers at Kennedy Krieger recently announced the groundbreaking discovery of the genetic mutation that causes Sturge-Weber syndrome and port-wine stain birthmarks.

For patients with Sturge-Weber syndrome, like Madisynn Rodriguez (left), the discovery offers hope for new targeted therapies.After almost fifteen years of study, Anne Comi, MD, director of the Instit

The Baltimore Sun: Kennedy Krieger researchers pinpoint cause of Sturge-Weber syndrome

May 17, 2013
An article spotlights a Kennedy Krieger research team that found the genetic cause of Sturge-Weber syndrome and port-wine birthmarks.

The discovery — Comi calls it a "game changer" — owes a lot to tenacity and technology. Comi, 45, and molecular scientist Jonathan Pevsner, 51, have both been trying to unravel the mysteries of Sturge-Weber since attending a conference on the disorder in 1999. It's been dubbed an "orphan disease," one that attracts relatively little public attention or research money.  
Read more

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.

Tropical Realty Golf Tournament

Apr 21 2012 - 7:30am - 1:30pm

Savannahs Golf Course
3915 Savannahs Trail
Merritt Island, FL 32953

Kennedy Krieger Institute to Observe Rare Disease Day

February 13, 2012

(Baltimore, MD) -- Kennedy Krieger Institute will join the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 29. The purpose is to focus attention on the needs of patients and families affected by rare diseases.

"This is a global observance," said Peter L. Saltonstall, president and CEO of NORD. "Individuals and organizations around the world will all be sharing stories of how rare diseases affect their lives."

The challenges of living with a rare disease, he said, include:

Bands on the Bay

May 5 2012 - 5:00pm - 10:00pm

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

Bands on the Bay

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.

Signs of a Syndrome

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

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

Syndicate content