The first two steps for almost any successful chapter are to develop and fully embrace a mission and then to figure out how to serve that mission. The Hudson Valley Chapter of United Spinal devised a great mission (with an even cooler acronym) — H.O.P.E — Health and wellness after SCI; Opportunity to fulfill goals and dreams; Peer support; Empowering individuals to achieve independence. Now they are working on fundraising to support an exciting new event to bring that mission to life.
That event is tentatively titled the Spinal Cord Injury Empowerment Weekend Retreat, and would consist of a three-day retreat on the campus of Helen Hayes Hospital in West Haverstraw, New York, where members of the local SCI community would receive a comprehensive, education-filled overview of helpful topics and local resources.
The chapter’s board is creating a survey to seek members’ input on what specifically should be focused on and offered. Chapter President Matthew Castelluccio tossed out the following ideas: a keynote speaker on SCI research, panels on sexuality, and a dinner dance with local adaptive dancers.
“We’d invite individuals here for a three-day weekend where they’d be exposed to adaptive sports, lectures on research, seminars on wound care prevention, bladder management, equipment maintenance and more. They’d get the opportunity to stay here or at an area hotel and we would provide assistance for them,” explains Castelluccio. “It’d be a full experience for them. For many it’d be the first time out of their house, so that’d be a whole new experience. We want to give them a foundation of knowledge and experience to help them better adjust to their lives.”
Castelluccio, who has a C6 incomplete and T6 complete injury, says the chapter has been developing the idea since soon after its inception almost two years ago, and it is hoping to hold the event next spring or summer. He has done similar empowerment weekends with other organizations and thinks the chapter is uniquely positioned to have a big impact on attendees.
“Living with a disability myself, I try to think about where in my life there have been things I would have liked to know more about and things that would have been beneficial to me,” he says. “The retreat is a way to help individuals get those things.”
Castelluccio says the retreat will be open to people from all over the area, with around 11 openings to start with, depending on how much money the chapter can raise. The chapter is holding two major fundraisers this summer to support the event: a June 9 all-inclusive Zumba-thon; and a July 10 music festival at a local winery, featuring tastings, a raffle and more.
Beyond the Retreat
When he’s not helping plan the retreat, Castelluccio works as the adaptive sports and peer mentor coordinator for Helen Hayes Hospital. He grew up in the area, was injured in a motorcycle accident just miles from the hospital and rehabbed there, making him a natural fit for the position when it became available. He oversees a robust adaptive sports program in his dual roles with the hospital and chapter. With year-round offerings in 17 sports, including sailing, kayaking, skiing, waterskiing, yoga, bowling and much more, there is always something going on. Seeing people respond to the activities has been rewarding for Castelluccio.
“It’s been a great bridge to connecting with people and helping them connect with each other,” he says. “It’s amazing to see how some people who are not that into a support group environment react. When they come to a recreational activity that they enjoy, it develops into a support environment.”
With members located as far as six hours away, developing support communities where everyone can participate and feel comfortable can be a challenge. “We have to be a little more creative because our members don’t always have access to get down here for our meetings.” One solution Castelluccio has utilized is Skype, videoconferencing long-distance members into the chapter’s monthly meetings. “Our goal is to merge our two communities – inpatients and community members – so that the inpatients can learn from the community members. Skype is one way to do that.”
Find out more about the Hudson Valley Chapter at www.unitedspinalhudsonvalley.org or call 845/786-4590.