SOLON — The 2nd Annual Pediatric Rheumatology ‘Bone Dash 5k and Monster Mile’ run will take over the Solon Recreation and Nature Area (SRNA) Saturday, October 14 for a morning of fun benefitting the University of Iowa Stead Family Children’s Hospital’s Joining Hands Pediatric Rheumatology Support Group.
Rheumatology encompasses a broad range of autoimmune and inflammatory diseases and disorders affecting the bones, muscles, joints, and even internal organs. The Stead Family Children’s Hospital is home to Iowa’s only pediatric rheumatologists with three doctors on staff and Advanced Registered Nurse Practitioner (ARNP) Courtney Kremer, of Solon. Kremer and Research Coordinator Emma Leisinger started the event last year to raise money for the support group and met with success that exceeded their expectations.
“It took off way bigger than we expected it to for the first year,” Courtney said, “and our boss said, ‘Sign it up again,’ so the next week after we got back, we rented this out for the next year. It was just such a success and so much fun, we want to do it again.”
What’s new?
“A lot of it will stay the same because it was so much fun last year,” said Courtney, “But we do have more characters (superheroes and princesses) including Storm Troopers (Star Wars) from the 501st Legion’s Central Garrison. The 501st Legion is an international costuming organization dedicated to Star Wars much in the same way as a Civil War or WW2 re-enactment group with movie-authentic uniforms and props. 501st members often participate in charitable events with over $30 million raised since 2010.
Also, the 5k will be chip-timed this year.
Lillian, a Solon grad and rheumatology patient
Lillian, a 2022 Solon HS grad, was diagnosed while she was in 7th grade with Scleroderma, a group of autoimmune diseases that cause hardening and tightening of the skin and connective tissues due to an overabundance of collagen leading to a buildup of scar tissue or “hardening of the skin.” The results can include pain or numbness, discoloration of the skin, joint pain and restricted movement, and even digestive and respiratory impairments. In her case, there are numerous spots on her body, which brought unwanted and at times cruel attention from her fellow kids, as well as shoulder pain and digestive issues.
A number of medications were tried, but with little effectiveness.
“The hardest part about being immunocompromised is that not everybody seems to understand, and when I become sick it does affect me differently so it’s just very hard and difficult for other people to understand.” Her sophomore year, she recalled, included 72 medical appointments with 40 her junior year, and 75 her senior year. “I missed school a lot my senior year and it wasn’t just my peers who didn’t understand but also authorities and a lot of people would ask why I wasn’t at school and question me actually being sick, which was hard.” Despite the hardships, Lillian graduated on time and with high honors and is currently enrolled at Indian Hills Community College in the Radiologic (X-Rays) Technology program.
“I’m still definitely not better, I’m still struggling with it, but I do see medications working better now, but I do still have a lot of pain.” Unfortunately, there is no ‘cure,’ therefore treatment is based more upon managing the signs and symptoms.
How the Joining Hands Pediatric Rheumatology Support Group has helped
“We had a lot of patients inquiring about could they meet other kids with similar diseases and were on the same medications they were taking,” said Courtney, “So, we started the Joining Hands Support Group for any patient who has an autoimmune rheumatologic disease and it’s really taken off. Now our group has about 180 signed up.”
Money raised through the Bone Dash (and the Children’s Miracle Network) goes toward special events such as visits to the Children’s Museum and a zoo, which makes them free or at reduced cost to the families.
For Lillian it was a revelation and a blessing. “I met a lot of kids that I didn’t realize were also struggling with Rheumatology issues, not necessarily the same disease as me, but they were going through the same things, and it was just really cool to connect with them and be able to have someone else my age understand what I was going through.”
What to know if you go
Registration is entirely online at https://runsignup.com/Race/IA/Solon/BoneDash5KMonsterMileFunRun.
Packet pick-up will be Friday, October 13 at the Timber Dome from 6:00-8:00 p.m. and starting at 7:30 a.m. Saturday, October 14 until 9:00 a.m. with the race starting at 10:00 a.m.
Please note there will be no paper registration the day of, and no cash accepted.
U of I physical therapy students will lead a group stretch before the race.