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August 24, 2020Spina Bifida Association of Northeastern New York Celebrates the 10th Anniversary of their Annual Walk-N-Roll for Spina Bifida Virtually
The Spina Bifida Association of Northeastern New York (SBANENY) hosted their first Walk-N-Roll for Spina Bifida in 2011. The event raised $8,500 and gathered near 100 individuals living with Spina Bifida, their family members, and friends. This was a huge success for the Spina Bifida community. At the time, SBANENY had one part-time staff and a group of consumer volunteers working together to provides programs and services benefitting over 200 families living with Spina Bifida. No one could imagine the growth that would take place over the next ten years. The Walk-N-Roll has become a major fundraising event, gathering over 300 people, and raising over $25,000. And SBANENY now has one full time staff, two part-time interns, and 100+ volunteers providing information, referral, support, advocacy, systems navigation, and programming to over 400 individuals and families living with Spina Bifida. As the event grew, so did SBANENY.
Karen Wentworth, Executive Director at the time reflects: “When SBANENY held our first Walk-N-Roll 10 years ago, it was the biggest event that our organization had ever held. You could feel the excitement build from the first planning meetings, to the actual event, to the immediate plan afterward to make it an annual event.” The Walk-N-Roll is a family friendly walk event that raises critical awareness and funds for the Spina Bifida community. The Walk-N-Roll is more than a fundraiser though. The event is a celebration of the accomplishments of the estimated 166,000 Americans living with Spina Bifida and has been this way since its inception. Karen states: “That first Walk-N-Roll in 2011 gave people opportunities to connect, share and support each other. It was a perfect match for our mission to enhance people’s lives.” At a typical event, you would see young children who have never met someone else with Spina Bifida connecting with peers, parents sharing information and resources about developmental disability services, and adults discussing college or employment. “It is these connections that motivated us to keep going; their value can be measured through consistent growth in the event over the last 10 years!” stated Karen.
Even though SBANENY cannot host the Walk-N-Roll in-person this year, they are still finding ways to celebrate the anniversary of the event. In 2020, the Walk-N-Roll, presented by the Daily Gazette is taking place online and in the neighborhoods of those participating on Saturday September 5, 2020. Going virtual was a tough but necessary decision. “We knew we could not safely host an in-person gathering of the Spina Bifida community, but the committee was determined to celebrate the spirit of the Walk-N-Roll and do our best to plan a community event virtually,” states Julia Duff, Executive Director of SBANENY. The virtual Walk-N-Roll mirrors many aspects of the in-person event. People can attend for free, participate in contests, raffles, and trivia, receive t-shirts, connect with equipment suppliers, and each other. However, SBANENY is not expecting the financial turnout they usually have.
“Similar to so many nonprofits, we are facing fundraising challenges because of the financial impact COVID-19 is having on individuals and businesses” states Julia. Revenue from the Walk-N-Roll is directed to local programs and services for people impacted by Spina Bifida and during a pandemic, this is concerning. Julia continues: “People living with Spina Bifida face unique challenges managing multiple medical needs and secondary impacts on education, employment, transportation, housing, finances, and accessibility. COVID-19 exacerbates these challenges and we have been responding to increased requests for information and support.” Ultimately, the chance to connect and raise funds to support people with Spina Bifida mean more now, than ever.
To register and/or make a donation for the SBANENY Walk-N-Roll, for information about Spina Bifida, or the services of SBANENY, go to www.sbaneny.org or call the office at 518-399-9151.
