LOOP Blog

Quote from Lexa Fenster, PAC member and Co-Designer of Digital Tools to Support Your Team

I looked around the breakout room at our recent Community Conference, at the group of people learning together about using digital tools, and was pleased to see 90% of the room had whipped out their cell phones and started downloading a new app that had just been talked about. I thought to myself only at an ImproveCareNow Community Conference can you find an entire room ready to try out a new tool together. These moments - whether they are at an in-person conference, on a webinar, or in clinic - epitomize the often used ICN slogan “share seamlessly and steal shamelessly.”

First, we share and steal, then we test!

Have you ever taken one of those silly photos that attempts to distort your perception of a landmark or scene? For example, you might make it look like someone is holding the Eiffel Tower by its point or a friend is standing in the palm of your hand. Those photos are all about your point of view or your perspective. Perspective affects a lot of things. Perspective can affect your focus, opinion and even your advice. Recently, as I attend my first ICN Community Conference, the concept of perspective was with me throughout.

I’m Pam, and I’m a member of the ICN Parent Working Group (PWG). My husband Kraig and I have three teenagers, and I became involved in ICN soon after our oldest son was diagnosed with Crohn’s disease. He first started having symptoms in the fall of 2015 and was diagnosed in March 2016.

ICYMI – PAC hosted another Social Media Week leading up to the Fall 2018 ImproveCareNow Community Conference. Social Media Week is one way we get excited for the Community Conference! It consists of PAC members putting together a series of personal and highly-focused quotes, pictures and stories, which we share widely to raise awareness of ImproveCareNow and IBD. In the past, we’ve answered questions like: "What is your IBD story?" "What or who motivates you to keep on fighting?" and "How do you/or the PAC raise awareness for IBD?" and in the Spring members shared what the ICN Core Values meant to them. For the Fall CC we wanted to share stories and examples of how we are Better Together.

These are our stories:

When one thinks about a large international health improvement and research network of 109 care centers, the word “friend” may not immediately come to mind. But recently, as I attended my approximately 18^th ImproveCareNow Community Conference in 11 years, it was this word that kept coming to my mind throughout.

Hi everyone, my name is Natalie and I just graduated from the University of Cincinnati (UC) this August with a degree in Environmental Studies and minors in Psychology and Biology. On my own time I am a health & environmental advocate and enjoy fighting for awareness & understanding of things people may not be educated on (like Crohn’s disease, which I also have).

Thanks to the UC journalism department, I was prompted to write a short piece for a video and article I was featured in for my school. It was about overcoming adversity and making it to graduation, and I wanted to share it with you.

ImproveCareNow Community Conferences happen twice a year. While our community works together across the miles throughout the year, these in-person conferences provide an opportunity to work on developing and spreading QI and research skills and approaches; fueling our Network's use of data to drive and evaluate QI efforts; and developing partnerships that will lead to improved care processes and outcomes in pediatric IBD.

September 13-15 we will welcome patients, parents, clinicians, researchers, improvers, collaborators, and friends to the Fall 2018 Community Conference in Chicago, Illinois and we hope you’ll join us too.

Getting accurate, understandable, patient-friendly information about IBD is not always easy. But what if other kids who actually have IBD told you about IBD anytime you wanted, and would only give you information that IBD experts felt was accurate? And what if the information they shared would only take a few minutes? That would be great, right? 

My name is Maria and I live in Orlando, FL. In 2004, our family received the devastating news that our oldest daughter had Type 1 Juvenile Diabetes. I would have never imagined that a few years later in 2013, we would find ourselves confronted with yet another life altering diagnosis. 

My name is Maddie. I am 16 years old and I have Crohn’s disease (CD). I have used nutritional therapy as a primary treatment for my Crohn’s disease since my diagnosis at the age of 13. Nutritional therapy has changed my life – both my health and my relationship with food.