Why We Take Steps: A Father-Daughter IBD Journey

Jason and his daughter Taryn, a 20-year-old college student, share more than a last name—they share a mission. Both live with inflammatory bowel disease (IBD): Jason with ulcerative colitis (UC), Taryn with Crohn’s disease. And both are deeply committed to raising awareness about IBD and fundraising for cures. Today, Jason is the executive director of the Crohn’s & Colitis Foundation chapter in Nebraska and Iowa, and Taryn is a junior at the University of Nebraska-Lincoln. 

We sat down with Jason and Taryn to talk about their commitment to the IBD community and why they take part in the Foundation’s flagship fundraising event, the Take Steps Walks every year. 

When were you diagnosed with IBD, and what has your treatment journey been like? 

Jason: I was diagnosed with ulcerative colitis almost 25 years ago, right after my wedding. I had been sick for months leading up to the diagnosis. A local doctor helped me manage my symptoms with medicine for many years. Unfortunately, I had frequent flare-ups. I finally saw a specialist at Mayo Clinic in Minnesota, who prescribed a biologic. That helped for a while, but eventually I had to have my colon removed. When Taryn was diagnosed with Crohn’s in 2019, I was in Minnesota having a J-pouch surgery. 

Taryn: I was in eighth grade and had been losing weight and feeling sick for a while. I went to see many doctors, but nobody could figure out what was causing my symptoms. I got a lot worse and had to go to the hospital—that’s where I got diagnosed. I was there for three weeks, and it was really rough. I was so weak I couldn’t even go to the bathroom by myself.

What led you to get involved with the IBD community? 

Jason: For the first 18 years of having UC, I tried not to think much about it. Not very many people in my life even knew I had it. Taryn handled her diagnosis completely differently. She immediately wanted to learn more about it and started telling her friends what she was going through. The nurses at the hospital picked up on that and told her about the Take Steps walks. She joined the Children’s Nebraska Pediatric GI team in Omaha and created her own team in Lincoln, where we live. Her courage inspired me to get more involved in advocacy for IBD research and eventually led me to become executive director of the Foundation’s Nebraska–Iowa Chapter. 

Taryn: I came up with my team’s name, “Taryn’s Tip-Toers,” during that first hospital stay. Our motto is, “Sometimes the biggest journey starts with the smallest step. So tiptoe if you must but take a step.” That message resonates with me because I think you have to move forward no matter what obstacles you face in life. 

Every year since then, I’ve raised money for the Foundation through T-shirt sales and other fundraising activities. I enjoy supporting IBD research and raising awareness. More people need to hear about these diseases and what it’s like to live with them.  

What means the most to you at the walks? 

Taryn: Having my family there with me. They are my number one supporters as I navigate IBD. And even though IBD takes a toll on me, I know it takes a toll on them as well. 

Jason: I always get emotional during the ribbon ceremony. Every chapter incorporates these into Take Steps Walks. We tie several ropes to the stage and extend the ropes into the crowd. Everyone gets a ribbon and writes down their reason for being at the walk. Then, they tie their ribbon to one of the ropes, and we raise the ropes simultaneously as the IBD community.  

I’m usually on stage for the ceremony. Last year, when I looked out, I saw my wife, younger daughter, and all of Taryn’s other Tip-Toers gathered around Taryn, holding the ropes high above their heads. It was such a powerful moment. Take Steps isn’t just for people with IBD. It affirms everyone who supports them—parents, grandparents, cousins, friends, medical providers, and teachers.  

What encouragement would you give to people considering participating in Take Steps walks?  

Taryn: Take Steps reminds you that you are not alone, and that’s very important in this journey. It’s a place where you can learn so much about what other people are going through and why they are passionate about finding a cure. 

Jason: The Foundation has played a role in every major research discovery in IBD, including groundbreaking biologic therapies. We’ve invested $500+ million in more than 2,500 research projects. The advancements keep coming, and we are building energy toward finding more answers. Take Steps brings us closer to better treatments. We may be even closer than we realize. 

Sign up for a Take Steps Walk near you.