Volunteer to Make IBD Visible
Published: December 6, 2022
One of the best ways to Make IBD Visible is to join the fight to find cures for Crohn’s disease and ulcerative colitis and improve the lives of people living with IBD. As a volunteer-fueled organization, the Crohn’s & Colitis Foundation relies on the passion and dedication of our volunteers to advance our mission.
Opportunities to volunteer at the Foundation are widely varied. Whether you have an interest in advocating for improved access to care or would like to join us at your local Take Steps event or anything in between, there are lots of ways to volunteer both virtually and in person.
Some members of the IBD community choose to volunteer to make connections to other Crohn’s and colitis patients. For example, Jill Fuchs first got involved with the Foundation through a support group, and now she facilitates her own group.
“(The Foundation) had just started a support group, and as a 19-year-old I was really depressed,” Jill said. “I went to the meeting and I didn’t say too much, but there was a guy there who also had Crohn’s disease and a colostomy, and he was talking about all the marathons he was doing and how great he was feeling and that really changed my life. At that point I decided I wasn’t going to feel sorry for myself anymore, and if he could do marathons living with IBD, I was going to do something to change my life and to make a difference for others. I will never forget what that one meeting did for me.”
Jill later became involved in Team Challenge, where she developed a strong bond with her fellow runners and felt empowered by her own strength.
“I felt understood,” Jill said. “I felt like I was among my peers. I wasn’t the sick one, no one felt sorry for me, and I wanted other people to experience that feeling. Not only did I find my best friends in life through Team Challenge, but I found out that I was so much stronger than I even knew.”
Finding a community of IBD patients who have gone through similar experiences has been a key part of Rocio Castrillon’s volunteering journey with the Foundation. Rocio facilitates a virtual Facebook group for Hispanic/Latino IBD patients.
Rocio explained how the virtual group allows members to “have those conversations about language and culture, or how we tell our family – things that are so unique to us. There is a lot of opportunity to give the guidance and advice that I wish I had 20 years ago.”
Many patients who become connected to others in their community through volunteering become empowered to learn more about different ways to get involved with the Foundation. The first time Jordyn Burger saw fellow ulcerative colitis patients thriving was at a Take Steps event in Boston, it inspired her to get involved with the Foundation’s advocacy and research work. Jordyn currently volunteers as a patient advocate and research reviewer.
“Meeting them changed my perception of what was possible. I am now honored to volunteer for the Crohn’s & Colitis Foundation, sharing my story and working towards legislative change that will impact the larger chronically ill community,” Jordyn said.
By supporting the Foundation’s advocacy work, volunteers have an opportunity not only to improve the lives of millions of Americans living with IBD, but to Make IBD Visible and raise awareness of Crohn’s disease and ulcerative colitis.
“IBD is invisible, and too often the world overlooks us because we don’t look sick,” said Stephanie Stinson. “I’m an advocate because I want to put a face to the invisible Crohn’s disease and to place the patient at the center of every healthcare decision made."