Crohn’s and Colitis Awareness Week took place last week. Though Crohn’s disease and ulcerative colitis — collectively known as inflammatory bowel disease (IBD) — affect more than three million Americans, it can be hard to describe how debilitating this disease can be.
Raising awareness is crucial to increase understanding and encourage fundraising efforts for research into new treatments and a cure for IBD.
When I first met Chris Pedicone in 2016, he told me about his foundation, Cure for IBD. Recently, I got in touch with Chris to find out more. Here is what he shared with me.
Motivated by a cure
In 2011, Chris and his wife, Lisa, received the devastating news that their 11-year-old son had Crohn’s disease. The months after diagnosis were incredibly challenging for their family. Crohn’s disease doesn’t just affect the person who is diagnosed; it changes the family’s way of life.
Chris said his family started volunteering for IBD organizations, participating in half-marathons, triathlons, and 100-mile cycling events — raising over $100,000 in four years.
However, Chris realized that only a small portion of the proceeds went directly to research organizations. He said that many other parents of children with IBD shared his opinion that “other organizations weren’t making research a big enough priority.”
So Chris and Lisa decided to start a foundation where all of the funds raised would go directly to research facilities such as hospitals, teaching universities, and labs.
They named the nonprofit “Cure for IBD.” It’s short and sweet and gets to the heart of its goal of finding a cure.
Chris describes Cure for IBD’s mission: “To fund as much IBD research as possible in order to help find new treatments and cures as soon as possible.”
Volunteer-led
Cure for IBD is grassroots-driven and led by volunteers who host events, including fun runs and walks, 5K races, galas, casino nights, spaghetti dinners, and Facebook fundraisers.
Chris said, “We truly believe that finding cures will take a team effort, and we welcome people to get involved in any way they would like.”
While fun runs and walks are popular, with many attendees arriving from out of state to show support for those living with IBD, many people with IBD are unable to attend or participate because of the severity of their disease. My health is somewhat unstable, so I was delighted this year to receive an invitation to a virtual event for Cure for IBD.
Signup is straightforward: I submitted my name, donation, and the activity I intended to do in lieu of the walk. Cure for IBD even sent me some gear. For the activity, I chose my physical therapy session and exercises.
Some hospitals, universities, and research facilities that receive funding through Cure for IBD include:
- Children’s Hospital of Philadelphia
- The Cleveland Clinic
- Weill Cornell Medicine
- Mount Sinai Health System
- Seattle Children’s Hospital
- Cincinnati Children’s Hospital Medical Center
- Vanderbilt University
- Northwestern University
- University of Washington
To date, Cure for IBD has raised almost $1.4 million for research.
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Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.