For the past 10 years, Al DeCesaris has volunteered his time and devoted tremendous effort to fighting Sturge-Weber Syndrome, a rare and life-threatening neurological disorder that afflicts his niece Jenna. Through charitable events, extraordinary athletic endeavors, and his “For A Cure” books, he has created considerable awareness about the disorder and raised significant funds to further the efforts to find a cure.

CHARITABLE EVENTS:
Al’s crusade began not long after the birth of his niece. Recognizing the importance of raising funds for the research and treatment of Sturge-Weber Syndrome, he and his family organized an annual concert and auction fundraiser called Bands on the Bay. Since its inception, the event has raised over one million dollars and helped fund research that led to the ground-breaking discovery of the cause of Sturge-Weber Syndrome.

ATHLETIC ENDEAVORS:
Even with the success of Bands on the Bay, Al couldn’t help but think there was more they could do to further the efforts to find a cure. More he could do.

In 2013, he set out on a solo cross-country bicycle journey in honor of Jenna, pedaling over 3,000 miles from Santa Monica, California to Ocean City, Maryland. The following year, he took on another incredibly challenging athletic endeavor, this time on foot. Running solo close to a marathon a day for three consecutive months, he covered 1,935 miles as he made his way from Lubec, Maine to Key Largo, Florida. Through his charity ride and run, he created awareness about Sturge-Weber Syndrome across the country, raised critical funds for medical research, and brought hope to his niece and countless others suffering with this devastating disorder.

BOOKS:
Al wrote about his experiences on the road: the things he saw, the emotions he felt, the challenges he faced and of the extraordinary people he met along the way. His books, Crossing America For A Cure: A Bicycle Journey Of Inspiration And Hope and Running The Coast For A Cure: One Man’s Journey For His Niece With Sturge-Weber Syndrome, are honest, entertaining and, above all, inspirational.

To further the efforts to find a cure for Sturge-Weber Syndrome, Al is dedicating all profits from the sale of his “For A Cure” books to medical research. The books are available in Kindle and paperback on Amazon.

CLICK HERE to purchase Al DeCesaris’ inspirational books

MOTIVATIONAL TALKS:
Al is extremely passionate about the charitable work he’s involved in and is always willing to share his story of advocacy and service with others. Using his extraordinary athletic endeavors as examples, Al delivers an uplifting message of inspiration and hope, and demonstrates how we all have the power to make a difference through charitable work. His audiences are motivated and empowered to find their purpose, go the distance for those in need, and create positive change in the world!

CLICK HERE to book Al DeCesaris for your next event

CREDENTIALS:
Al graduated from the University of Delaware with a Bachelor of Arts in International Relations. He furthered his education at the University of Baltimore, earning a Master of Science in Criminal Justice. He then went on to earn a Juris Doctor from Loyola University New Orleans School of Law.

Al is the Vice President of the Board of Directors of Celebrate Hope Foundation, Inc., an IRS registered 501(c)(3) nonprofit charitable organization dedicated to improving the quality of life of those affected by Sturge-Weber Syndrome and port-wine birthmarks.

He also serves as a Board Member of the External Relations Committee at Kennedy Krieger Institute, an internationally recognized institution dedicated to improving the lives of individuals with disorders of the brain, spinal cord, and musculoskeletal system.

STURGE-WEBER SYNDROME:
Sturge-Weber Syndrome is a rare congenital, neurological disorder. It is most readily identifiable by a port-wine birthmark on the face of those affected, and causes abnormal blood vessels to develop in the skin, eyes, and on the surface of the brain. The abnormal blood vessels in the skin and eyes can cause port-wine birthmarks and glaucoma. Yet, it is the abnormal blood vessels on the surface of the brain that pose the greatest threat because they often lead to other health complications, including seizures, strokes and stroke-like episodes, impaired motor coordination, paralysis, developmental delays, learning disabilities, mental retardation, migraines, mood and behavior problems and even death.

GROUNDBREAKING DISCOVERY GIVES PATIENTS HOPE:
According to Anne Comi, M.D. (Director of the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute), Jonathan Pevsner, PhD (Associate Professor at Johns Hopkins University School of Medicine and Kennedy Krieger Institute), and Douglas A. Marchuk, PhD (Director of Molecular Genetics and Microbiology at Duke University School of Medicine), the co-senior authors of the clinical research that produced the discovery, Sturge-Weber Syndrome and port-wine birthmarks are caused by a somatic activating mutation in the GNAQ gene which occurs during early pregnancy. “This is a complete game changer for those with Sturge-Weber syndrome and the millions born with port-wine birthmarks,” said Dr. Comi. “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.” Although much more research must be done, the study, published on May 8, 2013 in the New England Journal of Medicine, brings researchers closer than ever to a cure. “We have real hope in the next five to ten years…that there will be…new treatments and perhaps even a cure for Sturge-Weber Syndrome,” said Dr. Comi.

In Each Of Us Is The Power To Make A Difference!

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