Everything You Wanted to Know About CCFA
While I was in Michigan last month, one of the doctors said something that struck me. She said, “There are a lot of misconceptions about the Crohn’s and Colitis Foundation of America (CCFA). People think they’re all about money and doctors and pharmaceutical companies. But they are actually patient-focused and have some really great resources.”
I’ve always known that CCFA had some great resources. I have heard some people say that CCFA “doesn’t care.” Others have said they are out-of-touch. But I wasn’t convinced. I am relatively new to the advocacy scene. And while I understand that not all charitable organizations are “angels” and in fact, no organization is perfect, from my experience, CCFA has actually been quite pleasant.
Their mission, according to their mission statement is To cure Crohn’s disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases.
This doesn’t sound like an organization that doesn’t care. But I still wanted to get more information. I wanted to go directly to the source. I contacted my friend at CCFA and asked if there was someone I could talk to. Imagine my surprise when she set up an interview for me with the President and CEO of the organization, Mr. Michael Osso!
As a graduate of The Wharton School at the University of Pennsylvania, Mr. Osso knew early on that he wanted to work in the non-profit sector. Challenges that came along in his family life encouraged him to get involved on the health and wellness side of non-profit. He worked at the Leukemia and Lymphoma Society before finally being introduced to the former President and CEO of CCFA, Rick Geswell. Rick was looking for someone to fill the Chief Business Development Officer position and after two years, Mr. Osso was appointed as Mr. Geswell’s successor. As someone who has friends with IBD, Mr. Osso is aware of the challenges and needs of IBD patients.
CCFA was Founded by IBD Patients
I decided to find out some of the background behind CCFA’s founding. What was their motivation? The CCFA was founded in 1967 by Irwin M. and Suzanne Rosenthal, William D. and Shelby Modell, and Henry D. Janowitz, M.D. I am told that Mrs. Rosenthal was a patient and so was the son of Mr. and Mrs. Modell.
When CCFA was founded, Mr. Osso said, “there was no obvious place for them to turn for information or support,” and that their, “motivation grew out of a feeling of helplessness and desperation.” Strong feelings, I know, IBD patients experience all too well.
The early work of the organization provided support and education. It eventually began providing support for important research. As some patients know, back in the 60’s, 70’s and 80’s, there were not a lot of good treatments for IBD. Several treatments patients have today are a direct result of CCFA’s efforts to get the drugs approved by the FDA.
