One event in particular has been a cornerstone for our community: our Walk-Run-N-Rolls (WRNRs). This year, with the help of some amazing volunteer hosts, we held two wonderful and successful WRNR events in Massachusetts and Arizona. Though unique from each other, both events offered the signature feelings of family, camaraderie, and the promise of hope that comes with this invaluable community.
Coming together for these two special community events was extra impactful this year as we welcomed new faces and embraced familiar ones we hadn’t seen in person due to the pandemic. Combined, we connected with over 100 community members and their families, some of whom had only recently learned about SRNA.
Taking place just outside of Boston, the Massachusetts WRNR was particularly noteworthy for first-time volunteer hosts Jennifer Agersea and Alan Finger. After attending one of these events in 2018, Jennifer was inspired and driven to host her own event to help support others going through a new diagnosis. On September 10, 2022, Jennifer and Alan’s vision came to life. Over 45 people attended, some even traveling from other parts of the New England area to attend. The event raised over $11,000 –surpassing the original goal amount by over $1,200.
“It was my first time attending a Walk-Run-N-Roll, and I am so grateful for Jen and Alan as our volunteer hosts who made it all possible. It was so energizing being together with the SRNA community in Massachusetts. I felt honored to be part of an event where people could connect with others who understand and expand awareness for rare neuroimmune disorders. It’s incredible what can happen when we all come together.”
–Lydia Dubose, SRNA Community Engagement Manager
Joining us at the event was Dr. Mchael Levy, SRNA Board Member, and neurologist at Massachusetts General Hospital. Dr. Levy was kind enough to share a few words at the start of the event, sharing the importance of connecting in person with other community members and the impact of participation in research to further understand rare neuroimmune disorders.
View event photos and find out more about the 2022 Massachusetts WRNR sponsors here.
It had been three years since hosting the last Arizona WRNR for volunteers Kate Krietor and Julie Barry. Because of this, both were ecstatic to bring this event back to Phoenix in 2022. On Saturday, October 29, over 60 people showed up to Steele Indian School Park to help raise funds and awareness for the rare neuroimmune disorders community. The event had something for everyone: a costume contest for the kids, delicious food and homemade baked goods, a place for people to write their stories, and even a storytelling session, where several community members shared their stories of diagnosis and the roads they’ve traveled to get where they are now.
Our guest speaker was Barby Ingle, author and fellow rare disease patient. Barby shared her journey with a rare disease, encouraging those who’ve been diagnosed to keep fighting and to keep advocating for themselves.
“It was great to see everyone’s smiling faces after 3 long years! Kate and Julie did a fantastic job organizing the event. We had a wonderful time catching up with old friends and even met a newly diagnosed patient too. I think that’s what participating in WRNR is all about.”
-Gail Buch, AZ WRNR volunteer and participant
The Arizona WRNR was a huge success, raising over $11,700. We are incredibly grateful to Kate and Julie and the rest of the volunteers that helped make this wonderful event a true experience for our community members. View event photos and find out more about the 2022 Arizona WRNR sponsors here.
Moments like these, where past attendees embrace each other, entire families show up to support a single family member, and state lines are crossed for one afternoon to raise awareness for rare neuroimmune disorders –are moments worth celebrating. With 2023 around the corner, we look forward to the moments when we can gather and celebrate as a community once more. We are stronger together.