The Cherry Hill Education Association raised more than $10,000 for the non-profit organization Ehlers-Danlos Society through its 14th annual “Volley for Support” fundraising tournament that took place in October 2018.
The Society’s global community includes patients, caregivers, healthcare professionals, and supporters, who work to improve the lives of individuals with Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorders (HSD), and related medical conditions.
It provides patient and research support, and advocacy for genetic disorders whose symptoms include loose joints, stretchy skin, and fragile tissues. To date, no cure is available for these conditions.
“We are so thankful to the Cherry Hill community for choosing our organization as the beneficiary of the Volley for Support tournament,” Lara Bloom, the Society’s international executive director, said in a news release. “We are blown away by the generosity of all who organized and participated.”
More than 500 people participated in the volleyball tournament at Cherry Hill East High School, where teachers from all 19 schools in the district competed in an elimination tournament, which was eventually won by Horace Mann Elementary.
The event raised funds through ticket pre-sales, custom zebra T-shirts, refreshment sales, face painting, a moon bounce house, and a silent auction.
“I felt like a star out there in the crowd at Volley for Support,” said Samantha Lerman, a 7-year-old participant who has hypermobile EDS (hEDS).
Event attendees showed their support by wearing zebra stripes, which alludes to the common refrain taught to medical school students, “When you hear the sound of hooves, think horses, not zebras.” Thus, zebra stripes have become symbolic for EDS and HSD because the conditions — just like zebra hoofbeats — are rare, but can nevertheless be the correct answer.
The Ehlers-Danlos Society was nominated as the beneficiary for the annual fundraiser by teacher Kathy Ripple Gilmour.
Julie Lerman, Samantha’s 10-year-old sister who also has hEDS, said, “I got really excited when they picked Ehlers-Danlos syndrome. When I was at Volley for Support, I felt like everyone was supporting me.”
Volley for Support was organized in 2005 by six schools in the Cherry Hill school district of New Jersey in an effort to raise money and awareness for different causes. Since then, the event has grown and includes all schools in the district.
“Ehlers-Danlos syndromes and hypermobility spectrum disorders are incredibly under-recognized, which results in far too many of those who live with these conditions remaining undiagnosed and suffering with no answers,” Bloom said.
The potential impact of introducing an entire community to these syndromes is “just as valuable as financial support. Cherry Hill Schools have made a huge difference for the EDS and HSD community,” she said. “We can’t express our gratitude enough.”