NISKAYUNA — Stephanie Forman knows Wolf Hirschhorn Syndrome.
Her daughter, Olivia, has been diagnosed with Wolf Hirschhorn, a genetic disorder that affects many parts of the body. The effects include a characteristic facial appearance and delayed growth and development.
Forman is hoping for a cure — and helping any way she can.
Forman, who lives in Niskayuna with husband, Aaron, and son, Jack, is making an aggressive stand against the syndrome. She has founded Liv4TheCure, named after her daughter, who’s nicknamed “Liv.”
Forman and company are hoping the public will help. The charity’s Niskayuna Food Truck Festival will be held Sunday, Sept. 15, to raise money to fund research and education for rare chromosomal deletion disorders like Wolf Hirschhorn.
The festival will be held at Zenner Road Soccer Park behind Craig Elementary School off River Road from noon until 6 p.m. A $5 donation will buy access to the festival grounds; there will be free admission for children under age 5. Liv4TheCure has capped the entrance fee at $20 per family.
People will then be able to buy wraps, sandwiches and other favorite foods from several food trucks. Live music will be provided by Josh Casano, the band Up the River and a special half-hour of kid-friendly music performed by Carolyn Keenan.
Kids also will have the chance to jump and land in two bounce houses, ride ponies, check out the “Bizzy Bees Bus” from Spotted Zebra and wear colors from a face painter.
“We established Liv4TheCure as a way to fight for our daughter and others like her who are dealing with rare chromosomal disorders like Wolf Hirschhorn Syndrome,” Forman said in a news release. “Olivia has had such a profound positive effect on our lives, and the lives of everyone she encounters, that we felt a powerful urge to do what we can to help her, and children like her.”
Olivia will celebrate her 5th birthday in October.
Forman said the charity’s first food truck festival was held last year in Schodack. “We live in Old Niskayuna and we said, we can do this right at home,” she said.
Liv4TheCure hopes to advance science, technology and treatments for rare chromosomal deletion syndromes. More information about the event is available at liv4thecure.org. Forman can be contacted at [email protected] or by calling 518-225-4155.
Scheduled for the festival are food sellers NY Healthy Eats, Charcoal Dole, Curvy Girls, Burger 21, Given to Fry, Brad’s Catering, Rollin Smoke, Buena Comida and Kona Ice Truck.
Others on the schedule include Green Mountain Concessions, Recovery Project, Triple M Gems, Bath Fitter, Young Living Essential Oils, Nothing Bundt Cakes, Upstate CBD, Yum Yumz Italian Ice, Palate de la Rosa – Tacos, Psychic Medium Sandra Streun, Nerdy by Nature (Jewelry) and Alexandria Reid Massage.
There will be tents for Niskayuna Martial Arts and Amazing Athletes, which are both sponsoring the event. Other sponsors include the town of Niskayuna, Carter Sand & Gravel, Wolff’s Biergarten, County Waste and Big John’s Portable Toilets.
The Liv4TheCure Kickball Tournament, sponsored by Empire State Kickball, will start at 11 a.m. The winning team will receive medals and a free round of drinks and happy hour specials at Wolff’s Biergarten.