The morning of April 29th, 2018 was sunny and clear, but a strong wind was wreaking havoc on the picnic area in Canton, OH where SRNA’s Walk-Run-N-Roll was to take place that afternoon. As paper plates and brochures flew off the tables, SRNA’s Community Partnerships Manager Jeremy Bennett hopped in his car to purchase tape and thumbtacks to hold down loose materials. Despite this chaotic start, many enthusiastic volunteers stepped in to help, and the event began without a hitch.
As participants arrived at the venue, they were greeted with the smell of delicious Greek food provided by Papa Gyros Greek Grill and pizza provided by Antony’s Pizza. Each attendee was offered a t-shirt and was able to peruse prize baskets to bid upon. As more adults and families arrived, the atmosphere was charged with energy and purpose; everyone was united in the mission to bring awareness to rare neuroimmune disorders and to raise funds to support the goals of SRNA.
Before it was time to walk, run, and roll around the park, Jeremy gave an enlightening speech on the research, education, and support provided by SRNA to those in our community. He gave praise to Heidi Bournelis, the organizer of the Walk, and her helpers, who were instrumental in the planning and success of the event. Heidi’s daughter, Alexis, was diagnosed with Acute Flaccid Myelitis when she was three years old, so this cause is close to her family’s heart. After Jeremy finished his speech, Alexis’s grandfather also spoke on the importance of raising awareness and funds in support of research and finding a cure for rare neuroimmune disorders.
Finally, it was time for everyone to line up and take off down the path outlined for the Walk-Run-N-Roll. A steady stream of over 100 participants wound its way around the park as talking and laughter filled the air. Although the atmosphere was light, serious conversations were also held. As I walked around the park, I spoke to Heidi about her family’s initial struggle to get a diagnosis for Alexis. Her doctors had first failed to diagnose her and suggested that her symptoms may be psychosomatic, i.e. she was faking her symptoms. However, after many tests and a month of waiting, Alexis was finally diagnosed. Her story served as a reminder that SRNA’s work to spread awareness is far from over.
As the Walk-Run-N-Roll came to a close, families and friends said goodbye to one another as volunteers cleaned up the picnic area. I was happy to see many new friendships form over the course of the event. I hope that all the participants walked away with a better knowledge of rare neuroimmune disorders and the impact they can make by supporting research and education efforts.