CCFA Interview with Michael Osso (Part Three)

(READ PART TWO)

“We are trying to invest strategically in research that helps us phenotype patients better,” Mr. Osso explained. I wasn’t sure what a “phenotype” was, so I asked my friend, Aaron Blocker, from Support Crohn’s Disease and Ulcerative Colitis. For those of you who don’t know Aaron, he’s a Crohn’s patient who is studying the gut microbiome at Mississippi College (which is my alma mater by the way!). Aaron told me that the, “Genotype is the inherited genes in an organism. The Phenotype refers to the physical appearance of an organism, and it is the result of an interaction of the genotype with the environment.” I can’t say that I fully understand phenotypes… but it sounds, to this non-science-y brain, like basically they are studying the individual DNA makeup of patients to figure out how best to treat the diseases. It has been shown that genetics plays a role in people with IBD.

There are a lot of live support programs in the local CCFA chapters. However, Mr. Osso said they, “recognize that’s not always the way people want to receive support, so we have online support programs as well.” They have an online community as well as their Facebook page where many patients find support. There’s Camp Oasis for children with IBD. Camp Oasis, they have found, also helps adult patients as much as campers. Many of the counselors and volunteers running Camp Oasis are patients! Some of their other programs that provide not only education and support are Take Steps, Team Challenge and spin4. These programs aren’t just for patients! They’re for the caregivers as well.

“I’m glad you’re asking this question,” Mr. Osso began, “because caregivers are so important to CCFA and of course, to IBD patients.” I found, but am not at all surprised to learn, that the caregivers are almost more likely to engage with support than the patients themselves! “We have several education resources,” Mr. Osso continued, “for instance, we have a parent guide for kids with IBD, a guide for teachers and other school personnel.” They also have a caregiver and parent discussion boards.

I asked Mr. Osso if he could tell the 1.6 million Americans living with IBD and their loved ones one thing about CCFA, what would it be? His response? “The future is very bright.” He said CCFA is constantly creating “innovative” ways to provide support and education for patients. He said, “We are vetting, steering and molding […] necessary research to get better treatments quickly.” I would like to add that in my two years of being heavily involved in the IBD community, I have observed major changes and improvements going on within CCFA. I, for one, really appreciate the efforts that CCFA is taking to reach the patients and treat them as individuals.

The future is very bright for #Crohns and #Colitis patients. @CCFA Click To Tweet

So, if you are a patient or caregiver and are interested in learning more about CCFA or if you have questions or suggestions, there are several ways you can contact them! You can start by contacting their IBD Help Center. Email them. You can also call them at 888-MY-GUT-PAIN (888-694-8872). Mr. Osso said, “I would encourage [you] to engage directly with [your] local chapter.” You can do that by clicking here.

The last thing that Mr. Osso would like you to know is, “the whole reason we exist is to serve the patients and we want to do that in the best way we can, which requires their understanding of who we are, their involvement in what we do, their volunteers and their donations. And of course, we welcome their voice and their input.”

So, there you have it. I hope that this helps you guys understand CCFA better. I know I feel a lot better about CCFA knowing all this.