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Meet 7 People Who Are 'Carrying the Torch' for IBD

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Patients living with inflammatory bowel diseases (IBD) serve as the inspiration for the staff of the Crohn’s & Colitis Foundation of America (CCFA). The 1.6 million Americans living with Crohn’s disease and ulcerative colitis provide motivation to the more than 200 staff members, all of whom carry the #TorchforIBD. Read the testimonials below to learn more about seven staff members who are leading CCFA’s #IBDTorchRelay.

1. Kim, Take Steps Walk Manager, Tennessee Chapter

man woman and little girl holding sign

“When I was diagnosed with Crohn’s 30 years ago, many of the resources and medications available to our patients now didn’t exist. There was no Camp Oasis. There was no walk. There were no biologic medications. Yes, I was able to connect with other patients through support groups, but I was so sick my attendance there didn’t last long. I often felt like I was the only one battling this disease. In fact, it wasn’t until I started working for CCFA two years ago that I really started talking freely about my illness. Having met all the patients and caregivers I have met over the past two years has been amazing. To attend a walk and see hundreds of people gathered in one place all who are all either patients or the friends and family of a patient leaves me without words. Almost a year ago, at the age of 4, my nephew was diagnosed with Crohn’s disease and I am so grateful he has all the resources available to him now. I truly believe that, with the funds raised through programs like Take Steps we will find a cure.”

2. Derek, Take Steps Walk Manager, South Texas Chapter

man and his teenage daughter at park

“Thirty-two years ago, when I was diagnosed with Crohn’s disease, my treatment was limited to a handful of options. Doctors told me that there was no cure and that I would have this disease for the rest of my life. Six years ago, our daughter, Maurie, was diagnosed with severe Crohn’s disease and ulcerative colitis at the age of 11. Thanks to CCFA-funded research and breakthroughs in the development of new treatments, doctors are telling us that a cure is possible in her lifetime. Why am I so passionate about the mission of CCFA? Because I want a cure for my inspiration, my hero, my princess.”

3. Kristen, Community Development Manager, Northwest Chapter

two women standing behind a table

“Two-and-a-half years ago I joined the CCFA team in Oregon. I have gotten to know and become friends with many patients in our community and seen firsthand what these diseases can do to those affected. As a parent, the fact that our fastest growing patient population is children under the age of 18 and there is no cure is my biggest motivation for becoming an advocate for these families. There is no greater job satisfaction than being able to offer support and hope to these often isolating diagnoses.”

4. Jennifer, Take Steps Walk Manager, Central Ohio Chapter

woman taking selfie of two other women

“When I first started working at CCFA last September, I was not very knowledgeable about what Crohn’s disease and ulcerative colitis were. I was hired as a temp to help with a special event. Through this experience I was educated about Crohn’s disease and ulcerative colitis. Our guest speaker at this event was so passionate about CCFA’s mission. Her story was powerful, heartwarming and brought me to tears. I knew then that this was an organization I wanted to be involved in. In the past year I have learned how critical CCFA’s mission is to our patients and their families. CCFA not only helps with funding research and education programs, they provide support, compassion and hope for a future with a cure for Crohn’s disease and colitis.

5. Leslie, Take Steps Walk Manager, Wisconsin Chapter

women wearing costumes and boas

“Two years ago I started as a walk manager in Wisconsin. Not knowing much about the disease, I quickly learned about the painful effects of Crohn’s and colitis on our patients and families. Getting to know those families affected and their stories is what motivates me to work harder every day. Seeing the joy and appreciation on walk day makes the work CCFA does to find a cure and to support our patients even more rewarding.

6. Dawn, Assistant National Take Steps Manager, Philadelphia/Delaware Chapter

group of women at nonprofit event

“CCFA’s mission is one that I am dedicated to not only because it affects my family but for the 1.6 million people who suffer from these silent diseases. Throughout the past 19 years, I have met so many amazing people and heard many stories and each one touches my heart. Raising awareness, funds for research, providing education and support for our patients and their families in hopes for a CURE is what CCFA’s mission means to me.

7. Jamie, Take Steps Walk Manager, Greater Washington DC/Virginia Chapter

five women at an ibd event

“I am honored to be a part of the CCFA family. I initially got involved with CCFA because my son, Keagan, was diagnosed with Crohn’s disease when he was two. Since then I have met hundreds of patients and their family members. The courage with which they share their stories and the strength and determination in which they fight IBD has moved me and touched my life in countless ways. I truly cannot imagine better people to walk along side as we win this fight! It is truly a privilege to serve you and as one of our volunteers says, ‘Won’t it be great when we come together, not to work towards a cure, but to celebrate its discovery?!’ I hope to be there on that day cheering for each and every one of you!”

Join CCFA this fall and continue carrying the torch for our patients. Register today:

Originally published: August 4, 2016
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