About Us:

Bands on the Bay was created by the DeCesaris and Heck families following the birth of Jenna Heck, who was diagnosed with a congenital neurological disorder called Sturge-Weber Syndrome (SWS).The event raises money for the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute a state-of-the-art medical facility devoted to the diagnosis, research, and treatment of Sturge-Weber Syndrome. Dr. Anne Comi is the lead doctor at the Sturge-Weber Center. She leads a team of doctors from multiple disciplinaries to review Sturge-Weber Syndrome cases each month.

SWS is caused by blood vessel abnormalities in the brain, skin, and eyes, causing countless health complications, not all of which are known or understood, but include seizures and glaucoma. The seizures are unpredictable and vary in length and severity, and can lead to strokes, mental retardation, developmental delays, learning disabilities, migraines, vision impairment, paralysis, death.

SWS is most readily identifiable by a port wine birthmark that presents on the face. Bands on the Bay has raised more than $1 million over the past 9 years. Funds raised by Bands on the Bay directly support the development of new strategies to reduce brain injury and other adverse effects of SWS, help create new research positions, provide treatment for patients with no medical insurance, and pay for numerous clinical research projects.