Over 230 Join Walk-Run-N-Rolls for SRNA’s 30th Anniversary
This spring, with the help of some incredible volunteers, the Siegel Rare Neuroimmune Association (SRNA) hosted three Walk-Run-N-Roll events in different regions of the United States: Southwest, West Coast, and Midwest. With 2024 marking our 30th anniversary as an organization, we couldn’t wait to get back on the road and acknowledge this special milestone with our community members and their families.
On Saturday, April 20, we kicked off the season in Tucson, Arizona, with long-time volunteers Julie Barry and Kate Krietor. Julie and Kate began hosting Walk-Run-N-Rolls in 2015 and look forward to bringing the event to the SRNA community in the Southwest region every year.
SRNA’s Lydia Dubose shares, “It was wonderful to be a part of the Southwest Walk-Run-N-Roll and to raise awareness together! Julie and Kate were amazing leaders who gave their time as volunteers to organize this event. They created a space where old and new friends could connect, share stories, and spend time together as a community. This was such a special event, and I am so grateful for everyone who was a part of it.”
Over 45 people, including family, friends, and other community members, showed up to support, celebrate, and raise awareness. With their support, the event raised over $8,700. View event photos and read more about the 2024 Southwest Walk-Run-N-Roll here.
California Support Group Leader Philip Rive and new volunteer Lena Loquellano began planning their Walk-Run-N-Roll in 2023. After searching for the perfect location, they found Monte Verde Park, a quaint and secluded park within the city of Lakewood. With the help of SRNA community member Tom Blanchfield, the group put together a vision for the event, and on Sunday, May 5, that vision came to life. Over 85 people attended, and the event raised over $7,000.
Tom shares, “Going to the Walk-Run-N-Roll was great. It felt good to be involved in raising money for a worthwhile cause. It was also fun having some family and friends join in on the walk. I liked seeing and meeting some others who are dealing with similar issues of having a rare neuroimmune disease. Support is so important. Thanks, SRNA!”
Dr. Paula Barreras, neurologist, and neuroimmunology specialist at Cedars-Sinai Medical Center, was kind enough to attend and share her journey as a physician working with rare disease patients. At the end of her talk, attendees could ask Dr. Barreras questions about their diagnosis and her thoughts on different treatment options.
“The West Coast event was such an amazing experience from the early days of planning to the day of the event!” shares Lena. “I walked that day with family, friends, and others navigating life with a rare neuroimmune disorder. We shared our stories and made new friends. I walked away with a full heart and the gift of community. We owe it all to the SRNA staff for all their support and commitment to our community. I would also like to thank Dr. Barreras for her time and encouragement as well as a big thank you to all who volunteered, donated, and showed up to help us bring awareness. EXCITED FOR THE NEXT ONE!”
Our friends The MOG Project and Alexion Pharmaceuticals also joined us. Julia Lefelar, Co-Founder and Executive Director of the MOG Project, shared in a blog post, “We were struck by the comradery of participants as well as the compassion and supportive vibe of the event. This is so consistent with all of the other SRNA WRNR events and we look forward to supporting our friends at the SRNA in the future. We highly recommend that you attend one yourself if you can, or better yet, contact them to start one of your own!”
“Our first West Coast event was in parts a challenging and anxious planning and action step into the unknown, but also a dream fulfilled with the help and guidance of committed and caring SRNA staff.” shares Philip. “The successful event day was an emotional and joyful gathering of our generous TM and rare neuroimmune community of friends, family, and volunteers. Volunteering for SRNA gives meaning and value to our challenging diagnosis, recovery, and adaptation.”
See more of the event photos from the West Coast Walk-Run-N-Roll here.
For our final Walk-Run-N-Roll of the season, we traveled again to Kansas City, where second-time hosts Angie Keck and Megan Willis-Beikman, alongside new volunteer Stephanie Witt, combined forces to recreate the magic of their first walk in 2023.
On Saturday, May 18, it was a beautiful sunny morning as over 100 people joined us to raise over $8,250 — exceeding the $5,800 raised at the 2023 Midwest Walk-Run-N-Roll. SRNA’s Skye Corken shares, “I was excited to return to Missouri this year. Megan, Angie, and Stephanie once again did an incredible job putting this event together. Seeing the growth from last year, connecting with old and new faces, and feeling the excitement for our 30th anniversary made it all the more special. Thank you so much to everyone who came out!”
We were joined again by the team from The 501st Legion, an international costuming organization dedicated to celebrating STAR WARS™. This year, 13 characters attended, including R2-KT, Han Solo, and Chewbacca. Take a look at the event photos from the Midwest Walk-Run-N-Roll here.
These events were only possible with the passion and energy given by our volunteer hosts and their communities. These events were supported by national sponsors: Alexion Astrazeneca Rare Disease, Amgen, and UCB Pharmaceuticals; 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.
2024 marks 30 years of dedication to improving the quality of life of those diagnosed with ADEM, AFM, MOGAD, NMOSD, ON, and TM. We invite you to join us at one of our events this fall! Don’t miss this chance to celebrate with us, meet others diagnosed with rare neuroimmune disorders, share stories, and form lasting relationships, all while increasing awareness of these rare neuroimmune disorders. We hope to see you there!
- For the second time, SRNA volunteer Angela Jackson invites you to join her at the 2024 South Central Walk-Run-N-Roll in Houston, Texas. Learn more and register here.
- SRNA volunteer Andreas Melitsanopoulos invites you to join him at the 2024 Northeast Walk-Run-N-Roll in Norwalk, Connecticut. Learn more and register here.
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].
