…raved the email sent to me by our GI dietician Lacy and our GI nurse, Malerie. Feeling as if I’d been invited into a secret society, I read on. Inspired by other pediatric IBD groups with well-organized enteral nutrition therapy programs for pediatric inflammatory bowel disease (IBD), Lacy and Malerie were challenging our GI division at C.S. Mott Children’s Hospital to experience what it would be like to exist on an all-formula diet in the great state of Michigan, where a good percentage of social activities revolve around cheese and/ or fried food (not uncommonly, fried cheese). Continue reading
Welcome! – the Patient Advisory Council has been using that word a lot so far in 2016.
The PAC is growing quickly, illustrating the enthusiasm for the council. We’re proud to welcome four new members (with 3 joining in one week)! I’ve had the opportunity to get to know them and it’s my pleasure to introduce them to you here on LOOP.
Before we meet our new members let me just say a word or two about myself – in case we haven’t met yet. My name is Tyler Moon and I am the Recruitment Lead for the PAC. I’m a 19-year-old sophomore studying finance at Saint Louis University. I have Crohn’s disease and have since I was 9 years old. I’ve been a member of the PAC since its early days and am grateful to have experienced its growth and evolution firsthand. I’m passionate about making a difference in the IBD community as we make our way closer to a cure, and I won’t quit until one is found. In my (rare) free time, I enjoy Netflix binges, hanging out with friends, working out, snowboarding, and a newfound hobby – skydiving.
Now, without further ado, let’s say hello to our newest PACers!
Say HELLO to Samara… “My name is Samara Singer and I’m a 20 year-old student from Arlington, VA studying Social Work and Psychology at George Mason University. I am the chapter president of GMU’s Best Buddies, which is an international non-profit organization that advocates for inclusion and friendship for people with intellectual and developmental disabilities. Being the chapter president is extremely rewarding and comes with the important task of educating students about disabilities. My mother had Crohn’s Disease before passing away from Uterine Cancer in 2003. IBD runs heavily in my family on both my parents’ sides. I was diagnosed with Crohn’s in 2008 when I was just 12 years old. I was not on top of my medications, therefore over time my disease progressed and is now considered moderate to severe Crohn’s disease. Since I was diagnosed, it has been a difficult journey finding a medicine that has worked well for me. I have been hospitalized for several weeks over the last 8 years, mostly from allergic reactions to medications. When I was 16, I had to quit my life as a ballet dancer due to a new diagnosis of ‘Polyarteritis Nodosa’ or PAN, an autoimmune blood vessel disease. Eventually, I was put on Methotrexate, a medicine that serves to control both the PAN and Crohn’s. I highly dislike taking Methotrexate – I have to inject it weekly myself in my upper thigh. Fortunately I have almost no side effects, except for nausea. I am looking forward to helping to spread awareness of IBD. As the years go by, I am meeting more and more people that are affected by IBD and it astonishes me.”
Say HELLO to Missy… “My name is Missy O’Doherty and I am currently a junior at the University of Denver. I grew up in San Diego, California, where I discovered my love for music, medicine, and science. I am studying biological sciences with a dream of going to medical school. My love for medicine and science was really fostered the summer I was diagnosed with Ulcerative Colitis at just 11 years old. For the first three years after my diagnosis I nearly exhausted every treatment option available for children with IBD with no relief. Finally during high school I found a doctor and medication that really clicked and I became incredibly interested in the cause. That’s when I became involved with the Crohn’s and Colitis Foundation of America. Since my involvement, I have completed three triathlons with their Team Challenge fundraising program, as well been involved currently on their National Council of College Leaders. Despite every trial and tribulation I’ve had over the past 10 years, I have become more and more passionate about advocating for patients and after getting involved with CCFA’s NCCL. I knew I wanted to find ways to further my impact on the 1.6 million. When I learned about ImproveCareNow, I knew it was something I wanted to be a part of. I joined the PAC because I know the patient’s voice is the most important and I want to be able to advocate patients in a way I never have through my other involvement. I am incredibly excited for this opportunity!”
Say HELLO to Kolin… ”My name is Kolin Kulzer. I was diagnosed at age 7 with Ulcerative Colitis and have been fighting ever since. After a few complications, I wound up at Children’s Hospital of the King’s Daughters and have been treated there ever since. Through their efforts and involvement in ICN, I have been able to continue with my life while not having to fear my IBD, and I hope to be able to help others in the same way through PAC. I now attend James Madison University in the pursuit of a chemistry degree, and one day I hope to attend medical school, proving once again that my disease does not define me, it encourages me.”
Say HELLO to Jaycee… ”My name is Jaycee Hobbs. I’m 16 years old. I live in Arkansas. I was diagnosed with Ulcerative Colitis in November of 2014. I was in the hospital for two months with shigella, Cdiff, several colonoscopies, and finally a blood transfusion. Sami Kennedy introduced me to the PAC and I joined to help others and raise awareness for Crohn’s and Colitis! Since I was diagnosed, I have been recognized many places. I am now the 2016 local ‘Honored Hero’ of Arkansas. I have met so many people along the way and hope to meet so many more!”
We’re excited about what Samara, Missy, Kolin and Jaycee bring to the table and what we will accomplish this year with their help. The PAC plans to increase our impact in 2016 by welcoming even more patients! Join us and make a difference!
Email firstname.lastname@example.org and connect with @ICNPatients on Instagram & Twitter
The Patient Advisory Council (PAC) is so simple, yet so complex. It’s simple in the sense that each member is a young patient with IBD and together we are working within the community to improve care and make a difference. It’s complex in the sense that each PAC member brings their own unique experiences, knowledge and know-how and applies these in different ways to accomplish our goals. And there is even another layer of complexity when you consider the battles my fellow PAC members face daily from IBD. The PAC is diverse and each person’s unique contribution is crucial to the achievement of our goals; many of us have written or talked about what we do for the PAC, but what about the reverse?