Bon Voyage for Brandon! Cincinnati or Bust!
In early August, Brandon Negassar will be leaving for Cincinnati Children’s Hospital with a big dream. Brandon wants to get well so he can attend school like other fifteen year old children, go to ball games and concerts and have a life free of the constant pain he’s known for his entire life. The Port St. Lucie teen has been diagnosed with Junctional Epidermolysis Bullosa – a genetically inherited disease which manifests itself through skin blistering, scarring, pain and high risk of infection. Brandon’s skin is so fragile that wearing a cotton T-shirt or accepting a hug from a friend can result in blistering and life-threatening wounds.
Though there is no cure for Brandon’s illness, his medical professionals have referred Brandon to the Cincinnati Children’s Hospital (CCHMC) to be assessed by a team of experts in Epidermolyis Bullosa. At CCHMC, Brandon will be examined by surgeons, dermatologists, gastroenterologists, pain management professionals, dental experts, physical and occupational therapists, nutritionists, psychologists and nurses. His family will meet with social service professionals and doctors to try to develop a lifesaving plan of action to combat Brandon’s illness and give him a chance at a real life.
On Wednesday, August 5th, the Van Duzer Foundation will be hosting a Bon Voyage for Brandon at Big Apple Pizza and Pasta in Fort Pierce – to help send this young man off to Cincinnati with a big splash, our love and positive energy, prayers and some funds to help defray the enormous expenses, most of which are not covered by insurance. As you can imagine, Brandon’s family is under tremendous pressure simply caring for Brandon and tending to his constant medical needs – add to that the overwhelming financial burden and you can understand why the Van Duzer Foundation and the community are coming together to help.
Beginning at 4 p.m., Big Apple Pizza and Pasta in Fort Pierce will reprise its fabulously famous and wildly popular ritual of donating ALL proceeds from the sale of food and beverages for the evening to help Brandon’s family. Whether you dine in or call ahead, every penny you spend will go to help Brandon and his family seek the best care available. Because Brandon is a big fan of great music, the Van Duzer Foundation has enlisted the aid of some of the area’s most talented and well-known musicians. Providing musical entertainment while you wait for your pizza and salads on that fair summer evening will be the one and only Don Ciccone, one of Frankie Valli’s Four Seasons, who is currently appearing with a revamped version of his original band The Critters with Don Ciccone. This fabulous musician was also one of Tommy James’ Shondells and you’ll find yourself humming and dancing along – and probably surprised you remember so many of the words! Also appearing that evening will be St. Lucie County’s own musical phenomenons Michelle Lucey and Alicia Tomasko, legendary local drummer Brother Judah Williams with Sankofa, ‘Connected Souls’ featuring Mike Jordan & Doreen Poreba and the Magnificent Megan Moran, all taking the stage and sharing their tremendous musical talents to make this the event of the summer. And it won’t cost you a penny to come and enjoy the music – though we’d be most grateful if you’d make a donation to help Brandon’s family.
It’s all happening Wednesday, August 5th only at Big Apple Pizza and Pasta at 2311 South 35th Street, directly across from IRSC’s main campus. The fun begins promptly at 4 p.m. and lasts until 9, with music, dancing in the street (or at least the parking lot), great food and a chance to come together as a community and help a great kid have a chance to live. Created in 2008 and known for unique and fun events, including two Guinness World Records, a Dodgeball Tournament and the International Federation of Competitive Eating’s Best Ever Pizza Eating Competition, the Van Duzer Foundation has donated over $116,000 to St. Lucie County families and individuals in crisis. For additional information on Brandon’s Bon Voyage, Epidermolyis Bullosa, or the mission of the Van Duzer Foundation, please visit www.thevanduzerfoundation.org online, or call (772) 528-3467 to see how you can help celebrate Brandon’s Bon Voyage!