People with TM, NMO, ADEM and ON and their families have a lot of bad days. But I think it’s safe to say that 300 people touched by these disorders who were present at the first-ever Illinois Walk-Run-N-Roll on Oct. 6, 2013 had a good day. A very good day.
The weather could have been warmer but not the mood of the crowd. We needed this event. We loved being together and meeting each other.
Our 11-minute video tells the story far better than words on a page. But highlights included the 1.2-mile paved course in beautiful McCollum Park in Downers Grove, Illinois, marked with SRNA directional signs. There was a covered pavilion with seating for up to 200. There were t-shirts, goodie bags for adults and kids, and free food and drinks donated to us by Pepsico, Caribou and other businesses. Everyone received a participation medal upon reaching end of the course.
There were banners and we had a group photo taken with one of them. There were basketball courts right next door to the pavilion where volunteer coaches gave everyone a chance to try wheelchair basketball. During the Program, SRNA Executive Director Chitra Krishnan spoke about the organization. Dr. Allen De Sena, SRNA’s James T. Lubin Clinician-Scientist Fellow from the TM and NMO Centers at the University of Texas SW, gave the keynote address on recent developments in research and treatment. We took time to remember Nicolette Garrigan, a remarkable SRNA volunteer and support group leader from Illinois, who lost her battle with her illnesses shortly before the event.
Jen Starzec, 15, read from the book she co-wrote with Sarah Todd Hammer on their experiences with TM entitled “5K, Ballet and a Spinal Cord Injury.” There was a DJ, a silent auction, door prizes and a display of posters showing the diversity of patients.
As of today—more than a month after the event—$40,000+ has been raised. You now know what happened. But equally impressive are the people who made it happen.
First is Chitra who had the courage to envision “10 Cities, 1,000 People, $100,000.” Her intelligence and enthusiasm guided the Illinois volunteers every step of the way. Through Chitra, we connected with Roberta Pesce who was our technical guru from day one, connecting us with other members in IL, setting up our site on CrowdRise, training us, designing communication materials, to name a few.
Also vital to our efforts were Josephine Milhalopoulos, who has NMO, and her husband John. They were long-time residents of Downers Grove, the town that appeared on a map most convenient to potential participants. They suggested McCollum Park and we met there to check it out—it seemed perfect.
Josephine also invited me to a fundraiser for the Guthy-Jackson Charitable Foundation where we met Victoria Bertolami, who has NMO, and her mom Debbie. It was well-organized, enjoyable and successful. Clearly, Debbie and Victoria knew how to manage a fundraising event. We needed them on our team and they didn’t hesitate to say “yes.” Of their many contributions were food, drinks and gift items from Debbie’s employer, Pepsico. Sadly for us, Josephine and John moved to Florida before the event took place, but not before finding the place and people to make it work.
At the same time, Chitra connected me with Liz Beutel who has been very involved in SRNA events, camp and fundraising since her son Drew was diagnosed with TM as a baby. Liz’s passion, creativity and experience as a mom and a teacher were essential to the success of the event. Without her, there would have been no wheelchair basketball, no silent auction, no awareness posters, no Caribou coffee, less funding and a million other details too numerous to mention. The Illinois Walk happened in large part because of her efforts.
As soon as I sent out a request for committee volunteers to SRNA members (who had agreed to be contacted), I got an immediate response from Michelle Alecia Wynter who has TM. Her first feat was securing a Proclamation from the State of Illinois, declaring Oct. 6, 2013 as SRNA Day. She went on to handle our PR and social media.
Soon after, we were joined by Mario Ortegon, father of 21-year-old Elliot who has had ADEM and TM since he was 10. Mario found our awesome DJ who donated his time and gave our event its celebratory tone.
Another committee member was Constantin Ursache, originally from Romania, who was diagnosed with TM while he was a young man in medical school. Constantin and his wife Camelia graciously hosted one of our meetings in their home and Constantin was the one who always reminded us of our reliance on our faith for strength and hope. He delivered the invocation at our event.
Also joining us were Cicely Anderson, who has TM, and her mom Sheri Anderson. Both brought extensive experience with fundraising and walk-a-thons. Cicely accepted responsibility for finding low-cost, high-quality medals and t-shirts—and gave up a lot of sleep in the process. Sheri turned out to be the best emcee on the planet (in our opinion)!
Mary Crist, who has TM, and her husband, Mike, also stepped up. They helped with PR and connected us with their talented daughter Karen, a graphic designer. Karen designed our Illinois Walk logo and her husband Jon Bobbe was the volunteer photographer who climbed a ladder to capture our treasured group shot.
In addition to their hands-on work, all these committee members also raised funds and brought participants to the event.
Finally, I can’t forget Jon Kartman, my significant other for the past 13 years. He was in charge of the course itself, including creation of the directional signs. Beyond that, he ‘had my back’ all day long. Jon is so quiet, it’s easy for people to forget he’s there. But for me, he is a rock. He’s been at my side for all my worst TM days and my best TM day ever, Oct. 6, 2013.
It was a great privilege for me to help lead the first-ever Illinois Walk Run and Roll for SRNA. I can’t express how much it meant to me and how much I love and respect the Committee members, volunteers and participants. I now have the pleasure of serving on the 2014 committee watching next year’s co-chairs, Liz and Debbie, capably lead the second-ever Illinois Walk Run N Roll.
Just one last thought: thank you, Chitra, for giving me this opportunity and for your unfailing confidence and support. You’re the best!
Please make sure to watch the video with all the pictures of the day here!
~ Nancy Dove