ImproveCareNow Pac


Motivation

The events of the last few weeks have had me reflecting on some things. And while I in no way have the writing skills of the great Sami and Jennie, I thought I would do my best to capture what I have been thinking about.

But a little bit of background for you all. I have been interning with ImproveCareNow through Cincinnati Children’s this summer and I also just experienced my first hospitalization in over 3 years. Throughout my internship, I was focusing on the motivation that drives people to be involved with a patient-focused group like ImproveCareNow.


PAC Creates Infographic


Camp Oasis

How many times have you heard that Camp Oasis – a camp just for kids with Crohn’s disease and ulcerative colitis – is a special place and experience for kids with IBD? Probably more times than your fingers can count. Even still, deciding to go to camp isn’t always an easy choice to make.


Patient Perspectives on Mentoring

The PAC is working to expand a patient-to-patient mentoring program. They have a lot of momentum right now and PACer Christian Hanson and his task force members wanted to share why mentoring is important to them and how they see it making an impact in the lives of others living with IBD.


World IBD Day 2016

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Building its success together.

Just after the ImproveCareNow Spring Community Conference last month, I wrote about the anxiety and anticipation that can precede such events. As I explained, “what we really want is to have set a scene that will allow all to feel welcome, included, part of the community, free to share their ideas and expertise regardless of role, and that they will leave having felt both delight and full of the “human affections” that are (or should be) the hallmark of a truly collaborative improvement community.”

After the conference, we asked members of the community—from diverse roles and centers—to share their perspectives on how we did. We hope you’ll enjoy their words. I know we all feel the challenge to maintain our momentum and indeed do even better next time and hope you will join us in finding ways to make our next community gathering equally inclusive and participatory – the very best it can be!


Dating with Crohn’s: The Big Moment

Dating, especially in the early stages, is full of emotion…excitement and nervousness are sure to abound. However, with IBD patients, there’s a bit more hiding beneath the surface that the other person usually does not yet know about. How do you tell your significant other about IBD? How does one explain something so complicated? How do you work it into conversation? When is the right time? One of our new PAC members, Samara, recently started dating and has personal experience to share.


Say Hello to Four New PACers

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!


What has the PAC done for us?

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?


PAC Year in Review

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We’ve had a dynamic year, filled with changes! Looking back on all that we have accomplished, we can’t help but be excited for the upcoming year, the exciting things we have planned, and the goals we plan to achieve. The PAC will be saying so-long to 2015 and ringing in the New Year with a redesigned council structure, new task force leaders, and new co-chairs.


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