Crohn’s Disease Is No Laughing Matter

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Of the many organizations that I’m involved with, The Crohn’s & Colitis Foundation of America’s Long Island Chapter really resonates with me. I know a number of people afflicted with these inflammatory bowel diseases, which really wreak havoc on a person’s quality of life. I’ve been on the corporate advisory board for more than 10 years and ever since I went to my first event and heard stories from some of the speakers that were there that night, I couldn’t help wanting to get involved knowing that I might be able to help someone with Crohn’s or colitis by raising awareness. This Garden-City based chapter raises about $2 million a year, which goes towards research, treatment and programs that help with the quality of life for adults and children who are afflicted by these types of irritable bowel syndrome (IBS).

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For its upcoming Laugh ’Til It Stops Hurting fundraiser to be held Saturday, April 18 at Old Westbury’s Glen Oak Country Club, renowned comedian Caroline Rhea is set to headline. The evening’s honorees will be Manhasset residents Dr. John Procaccino, who’ll be receiving the Distinguished Physician Award, and Farrell Fritz’s Thomas J. Killen, who will be given the Community Champion Friend & Advocate Award.

Caroline Rhea
Caroline Rhea

According to CCFA Long Island Chapter Director of Development Susan Gomberg, the event will raise about $450,000. This money will go a long way towards helping to try and find a way to solve Crohn’s disease, which currently has no cure and is only being better understood by the public in recent years.
“Our mission is to find a cure for Crohn’s disease and ulcerative colitis and to improve the quality of life for adults and children suffering from these diseases,” Gomberg said. “There have been so many improvements in the medications and in awareness. When Shelby Model was one of the founders of CCFA in 1967, there were considered to be 50,000 patients in the country. There were probably many more than that and some people didn’t get diagnosed. Now there’s 1.6 million patients and that’s probably a conservative number.”

What’s the difference between Crohn’s disease and ulcerative colitis? Gomberg explained to me that Crohn’s disease can occur anywhere along the digestive tract, while ulcerative colitis is limited to the colon. While Crohn’s has no cure, surgery involving the complete removal of the colon is the only cure for ulcerative colitis. Unfortunately, not only does this mean that the patient winds up either living with a waste bag or a procedure called a J-Pouch, which links the small intestine to the rectum in a U-shape not unlike what you find under your kitchen sink, the end result often winds up being that the patient winds ups with Crohn’s disease.

There is hope thanks to the money the CCFA has raised over the years, something Gomberg is quick to point out.
“CCFA has been instrumental in every major development in the understanding and treatment of Crohn’s disease and ulcerative colitis. CCFA has been around for 45 years and has been instrumental in every single development and so many advances,” she said. “We provide support groups, education programming and webinars. Since its inception, CCFA has funded more than $216 million in research. In terms of advances, there are just so many. We have lots and lots of studies going on every year, but our two major focuses of research are on something called the microbiome project and the genetics project.”

The Crohn’s & Colitis Foundation Long Island Chapter will be celebrating 25 years with its Laugh ‘Til It Stops Hurting event, which will be held Saturday, April 18 at the Glen Oak Country Club in Old Westbury. The event starts at 7:30 p.m. For more information, call 516-222-5530 or visit www.ccfa.org/chapters/longisland.

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