Dear Friends and Supporters of the Center:
Since 2005, the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute has been funded by a combination of federal grant support, foundation support, and philanthropy. We are particularly grateful for support from the Hunter’s Dream for a Cure Foundation, the Faneca 66 Foundation, the NIH-funded Brain Vascular Malformation Consortium, Bands on the Bay, the Ribak family annual golf tournament, and other fundraising events hosted by families in support of our research efforts.
The recent discovery of the Sturge-Weber Syndrome (SWS) genetic mutation represents a pivotal turning point in our research—more resources are urgently needed to leverage this discovery into new treatments. Unfortunately, over the last few years, federal funding for health care programs and biomedical research has become increasingly scarce, with fewer and smaller grants being awarded. Today, we increasingly count on the generous support of those champions of children’s health who help us do what we do best—providing and continuously improving the care of children and adolescents with Sturge-Weber syndrome—allowing our young patients to live life to its fullest.
We thank our supporters for their ongoing fundraising. Every donation—large or small—helps, and we are grateful for all support. In the meantime, we will continue to seek grant support and pursue research with the resources we have available to us. Thank you for your interest in supporting the Sturge-Weber Center at Kennedy Krieger Institute.
Sincerely,
Anne M. Comi MD
Professor
Neurology and Pediatrics
Kennedy Krieger Institute
Johns Hopkins School of Medicine
Director, Hunter Nelson Sturge-Weber Center
sturgeweber.kennedykrieger.org
Comi@KennedyKrieger.org
Sturge-Weber Syndrome Center: Funders
We would like to thank the following funders for their generous and ongoing support for the Hunter Nelson Sturge-Weber Syndrome Center at Kennedy Krieger Institute:
Faneca 66 Foundation
The Faneca 66 Foundation has provided grants which supported the clinical trial for Epidiolex for Sturge-Weber syndrome and is now helping to fund a trial of oral sirolimus for cognitive impairments in SWS. They also recently provided a grant that supports a post-doctoral fellow in Dr. Comi’s lab. Their generous support has helped the center to build upon the recent somatic mutation discovery with new treatment studies.
Hunter's Dream for a Cure
Hunter's Dream for a Cure helps raise money for children with Sturge-Weber syndrome and other neurological diseases. The foundation provides funding for research that could ultimately lead to a cure, a grant program for affected children and their families, and special needs programs in Colorado. The center was named in Hunter Nelson's memory to recognize the foundation's funding of nearly $500,000 between 2003 and 2013.
Bands on the Bay
Annual Sturge-Weber syndrome (SWS) concert and auction honoring Jenna Heck and benefiting the Hunter Nelson Sturge-Weber Syndrome Center at Kennedy Krieger Institute. Starting in 2006, this event is held annually and this year's event will take place in the fall. Learn more...
Tropical Realty Charity Golf Tournament
Since 2009 Mitch and Jen Ribak have hosted the annual Tropical Realty Charity Golf Tournament in honor of their granddaughter Lola to benefit the Hunter Nelson Sturge-Weber Center at the Kennedy Krieger Institute. They have also organized fundraising nights at local Uno Pizzeria restaurants. Learn more...
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How You Can Help
There are several ways that patients, families, and friends can support the Hunter Nelson Sturge-Weber Center’s mission. For more information, please visit our How You Can Help page.