News & Updates

Bay Weekly: 1,900 Miles for a Cure

Millions of people dump ice water on their heads to raise money for ALS. Hundreds of thousands walk for breast cancer. Can one lone person hope to make a difference? Especially fighting a plight out of the limelight? Annapolis lawyer and St. Mary’s High School graduate Al DeCesaris knows he can.

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NIH Funds Clinical Studies of Sturge-Weber Syndrome for 5 More Years

The Hunter Nelson Sturge-Weber Center at the Kennedy Krieger Institute has just received notice that the Brain Vascular Malformation Consortium (BVMC) will be funded for another five years.

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Game-Changing Discovery Of Gene Mutation That Causes Sturge-Weber Syndrome, Port-Wine Stain Birthmarks Offers New Hope

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.

"This is a complete game changer for those with Sturge-Weber syndrome and the millions born with port-wine birthmarks,” said co-senior study author, Anne Comi, M.D., Director of the Kennedy Krieger Institute’s Hunter Nelson Sturge-Weber Center. “Now that we know the underlying genetic mutation responsible for both conditions, we’re hopeful that we can move quickly towards targeted therapies, offering families the promise of new treatments for the first time.” Read more >

Additional Coverage of the Discovery:

Baltimore Sun WebMD.com HealthDay
U.S. News & World Report The Business Journals My Health News Daily
Genetic Engineering News FoxNews.com MedPage Today

Coloradoan.com: Couple who lost son help make medical breakthrough" Robb and Wendy Nelson started a foundation that led to a key discovery about the disorder their son Hunter died from. (June 2013)

Baltimore Sun: "Expert Advice: Birthmark could signal disorder" Dr. Anne Comi provides tips on how to determine when a birthmark might be a sign of something more. (January 2010)


Christian Schormann Music & Jewelry to Donate Holiday Profits to Support Sturge-Weber Research

 

Christian Schormann Music & Jewelry will donate all its profits this holiday season to research on Sturge-Weber syndrome.  
Christian Schormann directly produces all music and jewelry available through this collection. New jewelry designs are available this year as are last year's favorites, including a family of fairy angels made from polished silver (see picture below). 
If you are looking for a gift this holiday season, or are simply interested in supporting Sturge-Weber research, please visit www.christianschormann.com.

 

Christian Schormann Music & Jewelry will donate all its profits this holiday season to research on Sturge-Weber syndrome.  

Christian Schormann directly produces all music and jewelry available through this collection. New jewelry designs are available this year as are last year's favorites, including a family of fairy angels made from polished silver (see picture below). 

Christian Schormann Angel Family

If you are looking for a gift this holiday season, or if you are simply interested in supporting Sturge-Weber research, please visit www.christianschormann.com.

Thank You to Our Continued Supporters!

We would like to thank the incredibly generous support from the Celebrate Hope and Faneca 66 Foundations, which helped to make the Crossing America for a Cure event a huge success.

The Heck and DeCesaris families, who have been instrumental in supporting our center through the annual Bands on the Bay fundraiser, have continued their mission of creating awareness about Sturge-Weber Syndrome and raising funds for diagnosis, research, and treatment through the creation of the Celebrate Hope Foundation. The Celebrate Hope Foundation hosted the Crossing America for a Cure event, which donated all proceeds directly to our center. After hearing about the Crossing America for a Cure event, the Faneca 66 Foundation generously agreed to match all donations, dollar for dollar.

We are incredibly appreciative of the support from both of these foundations, as well as everyone else who helped to make this event a success. We rely on these fundraising efforts in order to make our center a success. We continue to research better diagnosis and treatments for Sturge-Weber syndrome, and the outside support allows us to move forward with that mission.

Please click here to find out more about getting involved with the Celebrate Hope Foundation.

Congratulations to the Heck and DeCesaris families and the Celebrate Hope Foundation!

We want to congratulate the Heck and DeCesaris families and the Celebrate Hope Foundation for the successful Crossing America for a Cure event that will be wrapping up this coming Monday October 28th, with a welcome party at the Greene Turtle in Annapolis, Maryland. Funds raised by Crossing America for a Cure will be used to support SWS research at the Hunter Nelson Sturge-Weber Center. We thank the many supporter, sponsors, donors, team and the Faneca family for helping to make this event a success. Please check out the 2 links below for more information:

St. Mary's alum bicycles across country for a cure

Peddle On: Man Bikes 3K Miles For Rare Disease Awareness

Annapolis Resident to Bike Across America for Sturge-Weber Syndrome Cure

On September 8th, 2013, Al DeCesaris, Jr., a resident of Annapolis, will depart on a 3,000-mile, 45-day bike ride from Santa Monica, California to Ocean City, Maryland, to raise awareness of Sturge-Weber Syndrome (SWS) and funds for the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute.

Crossing America for a Cure is a fundraiser hosted by the Celebrate Hope Foundation and created by Celebrate Hope Foundation board members, siblings Al DeCesaris and Ida Heck. The foundation and fundraiser are inspired by 9-year-old Jenna, Al’s niece and Ida’s daughter, who was born with SWS.

Recent findings by researchers at the Kennedy Krieger Institute revealed the cause of SWS: a genetic mutation that occurs before birth. These findings are truly a turning point for research on SWS, as targeted therapies are developed through continued research, offering families the promise of new treatments for the first time. Please listen to Dr. Comi’s video for more information; her lab group is actively working on studying novel treatment strategies for SWS.

This is a very exciting opportunity to spread awareness of SWS and to raise money for further study of the disorder. The funds raised through Crossing America for a Cure will directly support the development of new treatments for SWS. People can follow Al on his cross-country trek by viewing his blog posts, photos, videos and tracking maps at the Crossing America for a Cure website - http://crossingamericaforacure.com. You can also support this cause when you make a tax-deductible donation to the Celebrate Hope Foundation.


Additional Media coverage

NIH Expansion of Rare Diseases Clinical Research Network to Include Kennedy Krieger Institute (October 2009)

Research Update: The Hunter Nelson Sturge-Weber Center Provides New Insights into the Treatment of Patients with Sturge-Weber Syndrome (April 2009)

Heck Family and Dr. Anne Comi profiled in article in the Capital Gazette (April 30, 2009)

Baltimore Sun profiles local Annapolis family and their fundraiser for the Hunter Nelson Sturge-Weber Center (April 26, 2009)

Read article in Pediatric News on Dr. Anne Comi discussing brain involvement in Sturge-Weber Syndrome (February 2009)

Dr. Anne Comi discusses port-wine birthmarks and SWS with Pregnancy & Newborn magazine (September 2008)

Read article in Pediatric News on Dr. Anne Comi discussing the management of Sturge-Weber Syndrome (November 2007)

Hunter Nelson Sturge-Weber Center featured in front page story in the Baltimore Sun (September 30, 2007)

Woman's World magazine sheds light on SWS - read their profile of a Hunter Nelson Sturge-Weber Center patient and her family (April 3, 2007)

A Devastating Disease Beneath the Skin. Johns Hopkins Physician Update: Dermatology. Baltimore, MD. Fall 2002. p 4.

Press release: Hemispherectomy End Seizures in Many Older Children with Rare Seizure Disorder. Baltimore, MD. December 9, 2002.

Sturge Weber Center Unites Hopkins And Kennedy Krieger Resources Against Vascular Disease. Johns Hopkins Children’s Center News. Baltimore, MD. Fall 2002.