The Rochester Spinal Association, a chapter of the United Spinal Association, is truly a portrait in perseverance. Founding members Cathy Flanagan, Sue Shepard and Amy Scaramuzzino were on hand 25 years ago to cheer on Dave Resseguie and Bruce Holiday as they wheeled from Albany to Rochester to promote ADA awareness for people with disabilities.
In October of this year RSA celebrated its anniversary by holding the first annual Variety Live fundraiser. This one-of-a-kind event brought together influential members of the Rochester community and wheelchair users to champion the cause of RSA. Variety Live was the largest fundraiser in the history of RSA, raising more than $70,000 toward the chapter’s mission of enhancing the lives of people living with spinal cord injuries.
This success would not have been possible without the energy and vision of John Casey, the current board chairman. Casey suffered a traumatic spinal cord injury three years ago. Facing life as a paraplegic created daunting new challenges for him and his family. Fortunately, he began attending an SCI social support group that opened his eyes to resources in the community and most importantly the lack of adequate resources for families touched by spinal cord injury. Through his vision and determination, RSA set out with the goal of becoming a comprehensive resource for anyone living with SCI/D.
Team work was the key. Pulling from the healthcare, business, philanthropic and nonprofit entities in the Rochester community allowed RSA to develop a well-rounded board of directors. The first few meetings focused on developing the chapter’s goals, mission and vision. This process took some serious blood, sweat and tears, but the board persevered, knowing it was critical to the chapter’s future growth.
The founders quickly realized that good intentions meant very little if they didn’t have an accurate grasp on their membership. Updating mailing lists and researching ways to maximize community outreach became a continuous priority. Email, Facebook, social media and a dedicated website fuel marketing efforts.
The board meets monthly to access opportunities to be seen, heard and recognized. In Rochester alone there are, on average, 75 new cases of SCI per year and thousands of people in upstate New York living with SCI. The financial challenge for these families is overwhelming, with more than 25 percent of those with SCI living below the poverty line.
Discussions at the monthly social support groups cover the many issues facing the chapter’s members, including equipment, transportation, home modification, lack of insurance coverage, lack of healthcare services and access to resources. Partnering with United Spinal Association has helped grow the chapter’s peer mentoring and employment mentoring services. It has also opened the board’s eyes to the national scene and the importance of understanding and building on common strengths from community to community. United Spinal Association facilitates this sharing and engages on the common cause.
RSA’s local efforts include close relationships with organizations focused on maximizing the functional independence of those with SCI/D. RSA is excited about collaborating with Dr. Bradford C. Berk on the development of the University of Rochester Neurorestoration Institute. Berk previously worked as CEO of the UR Medical Center and brings a unique perspective, as he is a C3-5 incomplete quadriplegic as the result of a 2009 bicycle accident. The URNI will offer a comprehensive and integrated set of clinical services for the people it serves, focusing on post-acute and chronic care by offering state-of-the-art therapies that facilitate the restoration of nervous system function. The URNI will build robust clinical research programs utilizing the University’s existing strengths in neurology and neurosurgery (top 10 rated in U.S. News and World Report), and neuroscience (ranked seventh in NIH funding last year). Specific research areas will include pain, stem cells, complementary and integrative health, and devices for restoration of sensory and motor deficits.
The chapter believes that nothing is more inspiring than being part of a social support group that brings together people who have been in chairs for many years and people who are newly injured. The meeting can take on a “life of its own” as the more experienced listen and advise those faced with an endless list of challenges. One quickly realizes that there are no “perfect” answers. Each individual needs to find answers that work for him or her. What’s important is that RSA provide the exposure to potential resources and solutions for its members.