2023 Walk-Run-N-Rolls Bring SRNA Community Together
A year ago we set an exciting –albeit ambitious—goal of hosting at least four Walk-Run-N-Roll (WRNR) events in 2023, twice as many WRNRs that took place in 2022. We knew this would be a challenge, but we also knew with the right attitude and a handful of passionate community members, anything could be possible.
We are proud to share that this year, with the help of some amazing volunteer hosts, we met our goal to successfully bring the SRNA community together for four WRNRs in different regions of the United States. These events exist to bring together the rare neuroimmune disorders community, spread awareness, and raise funds to support groundbreaking research and continue to offer educational and support programs. Combined, we connected with over 200 community members and their families and raised over $29,500 for the rare neuroimmune disorders community.
On Sunday, June 4, we kicked off the summer season in Kansas City for our Midwest event. For first-time volunteer hosts Angie Keck and Megan Willis-Beikman, the event was nothing short of empowering. “I am so thankful for SRNA and having the opportunity to co-host the Midwest WRNR. As a care partner, it was such a humbling experience to be surrounded by community members who knew what my daughter was going through even more than I do. To find an organization who cares about my child just as much as I do has been such a healing experience for my entire family.” shared Megan.
Over 90 people, including family, friends, and other community members, showed up to support, celebrate, and raise awareness. With their support, the event raised over $5,800. “It was an honor to help organize and host the Midwest WRNR. We love the mission of SRNA and we’re thrilled to spread the word about rare neuroimmune disorders. The experience with our family, friends and community was heartwarming. It meant the world to us. Thank you SRNA!” shared Angie. View event photos and read more about the Midwest WRNR here.
Next, we returned to Massachusetts for the Northeast Walk-Run-N-Roll. In 2022, Alan Finger was a first-time volunteer host. This year, Alan returned to co-host with fellow community member Kristin Fortune. On Saturday, September 23, 2023, Alan and Kristin’s vision for an inclusive, lighthearted, and educational family event came to life. Over 60 people attended and the event raised over $15,800 – surpassing their original goal by over $5,800.
We were joined by guest speakers Dr. Michael Levy, SRNA Board Member and neurologist at Massachusetts General Hospital, and SRNA community member and volunteer Rebecca Salky. As attendees mingled over warm plates of pizza, we were lucky enough to have Rebecca share about her diagnosis journey. See more of the event photos from the Northeast WRNR here.
In October, we headed to Charlotte, North Carolina for the second Southeast WRNR hosted by Sarah Pritzker. This was Sarah’s second time hosting a WRNR event, this year honoring the 17th anniversary of her Transverse Myelitis diagnosis.
On Saturday, October 15, over 45 of Sarah’s closest friends, family, and coworkers came out to support Sarah along with others from the SRNA community. It was a beautiful fall morning with music, delicious bagels and coffee, and pumpkin decorating. Our guest speaker was Sandy Hanebrink, Executive Director of Touch the Future. Sandy shared her journey, modeled an exoskeleton to show how technology can impact mobility after a spinal cord injury, and about her involvement with SRNA.
With support from community members near and far, the event raised over $4,300 for the rare neuroimmune disorders community – surpassing the amount raised at Sarah’s first event in 2021. See more of the Southeast WRNR event photos here.
The final Walk-Run-N-Roll of the year was held on Saturday, October 28, in Houston, Texas. SRNA Peer Connect Leader Angela Jackson wanted to do more for SRNA’s community members and raise awareness. When she raised her hand at the beginning of the year to host a WRNR, we immediately said yes.
Over 35 people came out to support Angela and the SRNA community. With their support over $3,200 was raised. “I’m so glad I volunteered to organize a WRNR event in Houston. I remain in awe of meeting everyone, listening to their stories, walking together, and pacing our steps to complete a successful ceremonial walk. To follow is a quote from Romans 5, ‘Know that suffering produces perseverance; perseverance, character; and character, hope.’ shared Angela.
Joining us at the event was Dr. Kristen Fisher, Pediatric Neurologist at Texas Children’s Hospital and SRNA member Sarah Mendenhall. Dr. Fisher described her passion and experience treating children with rare neuroimmune disorders, emphasizing the importance of research and benefit of programs like SRNA’s Quality of Life Family Camp. Next, Sarah shared her story of being diagnosed with AFM as a teenager and what it has meant to be a part of a community of people who understand. See more event photos of the Southwest WRNR here.
These Walk-Run-N-Roll events would not have been possible without the passion and energy given by our volunteer hosts and their communities. These events were also supported by national sponsors: Alexion Astrazeneca Rare Disease, Horizon Therapeutics, and UCB; local sponsors; and individuals who generously donated to support the rare neuroimmune disorders community. Thank you for your support and for making these events so special.
We are incredibly grateful for the time that we’ve been able to spend with everyone who came out to these special events all across the United States this year. With 2024 around the corner, we look forward to the moments when we can gather and celebrate as a community once.
If you are interested in helping with or hosting a walk in the future, please start by filling out our volunteer application form or email us at [email protected].
