The Schubert-Martin Inflammatory Bowel Disease Center at Cincinnati Children's, in collaboration with the Crohn's and Colitis Foundation Chapter of Southwest Ohio, offers an education day for patients with IBD and their families.
The 14th Annual IBD Family Education Day was held on Sunday, March 3, 2019 at The Manor House in Mason, Ohio. The Keynote Speaker for 2019 was Noah Weber, with a virtual message from Larry Nance, Jr.
Noah is 15 years old and a sophomore at Scarsdale High School in New York. Sports impact him every day, as he is a huge sports fan as both player and spectator. In addition to watching and playing sports, as well as playing video games, Noah attends Camp Echo Lake, a sleepaway camp in the Adirondacks, for seven weeks each summer. He spends his free time with his friends, camp friends, and his 12 first cousins.
Noah also happens to have Crohn’s disease, an autoimmune disease of the gastrointestinal tract, for which there is currently no cure. And even though Crohn’s affects 1.6 million people, Noah felt very much alone when he was first diagnosed.
Noah was eleven when his pediatrician noticed that he was not growing, and that he lacked energy and had lost weight. Once diagnosed with Crohn’s disease, he had a tough year and a half; he suffered abdominal pain, anaphylactic reaction, multiple medication changes, and perhaps most memorably, could not go to summer camp. But something inspired Noah that summer of 2016. Encouraged by his parents to watch the summer Olympics, he saw Kathleen Baker, a college athlete, win two medals for swimming. Noah saw her jump out of the pool and thank her doctors and nurses, who had helped her get into competitive form for the Olympics despite a chronic illness. At that point the announcer stated that Kathleen Baker had Crohn’s disease. Immediately, Noah took to the internet and googled “athletes with Crohn’s disease.” He came across an article in USA Today on professional basketball player, Larry Nance Jr., who was diagnosed with Crohn’s disease at 16. Larry had also been tired and was not growing. Like Noah, Larry, too, loves sports, fantasy football, and video games.
He achieved his athletic potential, despite having Crohn’s disease, and is now an NBA player. The article also discussed how Larry finds time to listen to other kids with Crohn’s and colitis. During his infusions, he met with kids, signed autographs, and exchanged stories. Inspired by his story, Noah used social media to reach out to Larry, who responded with a phone call. That call from Larry Nance Jr. changed Noah’s life.
Together, they co-founded Athletes vs. Crohn’s and Colitis. Their mission is to raise awareness of Crohn’s and colitis in the adolescent population, and to help children realize their potential despite being diagnosed with a chronic illness. While Noah has not had an easy path with Crohn’s Disease, he would not have it any other way. He is a proud member of the inflammatory bowel disease community, and he hopes to have a meaningful impact on his peers. To date, Athletes vs. Crohn’s and Colitis has raised over $100, 000. The money has been used not only for programs to inspire other children living with IBD, but also for research targeting better treatments as well as a cure.
Presentations are available on the Crohn’s and Colitis Foundation website.