An East Coast Run To Create Awareness And Raise Funds For Sturge-Weber
Syndrome Research
In September of 2013, Al DeCesaris set out
on a solo cross-country bicycle journey in honor of his niece Jenna Heck, who
was born with a rare neurological disorder called Sturge-Weber Syndrome (SWS). His
Crossing America For A Cure bicycle
journey began in Santa Monica, California and concluded 3,088 miles and 45 days
later in Ocean City, Maryland. With the support and encouragement of friends
new and old, Al created awareness about SWS across the country, raised funds to
further the efforts to find a cure, inspired numerous individuals to join the
fight, and brought hope to Jenna and countless others suffering with this
devastating disorder.
Since 2006, Al, his sister Ida Heck, and
their family (now operating as Celebrate Hope Foundation, Inc.), through
various charitable events, have raised over $1,000,000 for
the cause. These funds have directly supported the work of the Hunter Nelson
Sturge-Weber Center at Kennedy Krieger Institute and helped fund the very research
that led to the discovery of the cause of SWS.
With
a cure for SWS now within reach, Al is determined to take on an ambitious new endeavor to create
awareness and raise funds for ongoing research. Beginning September 8th, he will run from Lubec, Maine to Key Largo, Florida, passing through 14 states and covering roughly 2,000 miles. Yet, to make his Running The Coast For A Cure charity run a success, help is needed. Support the cause by becoming a Run Partner, sponsoring the endeavor, or making a donation. Your support will greatly improve the lives of those suffering with SWS and further the efforts to find a cure.