It wasn’t until my niece Jenna was born that my eyes were opened. And it wasn’t until I saw what children like Jenna are made to endure that my view of the world started to change.
Jenna was born with Sturge-Weber Syndrome – a rare neurological disorder that causes abnormal blood vessels to develop in the skin, eyes, and on the surface of the brain. Although it manifests differently in each person affected, for Jenna it has resulted in a pronounced port-wine birthmark on the right side of her face and glaucoma in her right eye. Despite the severe problems these conditions present, it’s the abnormal blood vessels on the surface of her brain that pose the greatest threat because they often lead to other serious 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 in some cases even death.
Over the years Jenna has suffered debilitating seizures and stroke-like episodes, which have left her physically and mentally impaired. To see Jenna suffer with these conditions, to see her struggle because of her physical and mental limitations, to see her experience exclusion and ridicule because of her differences, is heartbreaking beyond words. Yet, her suffering – as well as her bravery and resilience –inspired me to fight on her behalf.
I wanted to do something unique and eye-opening to create as much awareness and raise as much money for Sturge-Weber research as possible. In 2013, I set out on a solo cross-country bicycle ride in honor of Jenna. Pedaling on average 75 miles a day, I rode from Santa Monica, California through 14 states and over 3,000 miles before completing my journey in Ocean City, Maryland. The following year, I took on another incredibly challenging athletic endeavor, this time on foot. Without a support team and with no marathon experience, I ran from Lubec, Maine, close to a marathon a day for three consecutive months, down the entire East Coast to Key Largo, Florida – 1,935 miles in all!
Through my charity ride and run, I created awareness about Sturge-Weber Syndrome across the country, raised critical funds for medical research, and brought hope to my niece and countless others suffering with this devastating disorder.
To further the efforts to find a cure, I wrote books about my charitable athletic endeavors, 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, and am dedicating all profits from book sales to Sturge-Weber research.
Until a cure for this devastating disorder is discovered, I will continue to fight for my niece Jenna and all those suffering with Sturge-Weber Syndrome – be it with my legs, my words, my voice.
Published in November 2016 in NYU Langone Health’s e-newsletter FACES: Finding A Cure For Epilepsy And Seizures.
