ImproveCareNow alex_jofriet


Igniting Energy for Learning Networks

Recently, I had the pleasure of sharing my story at a Learning Networks conference here in Atlanta. When you hear the term ‘learning networks’ just think ImproveCareNow, but for other chronic illness populations. This particular conference was unique because it brought four unique, budding learning networks together for the first time. The whole experience was extremely valuable, and it was amazing to see four learning networks that are at different stages, ranging from just starting out to those that have been doing it for a while. Sometimes in ImproveCareNow I find myself wishing change happened more quickly, but the experience helped remind me that we have come so far already. The purpose of my speech was to energize and inspire the participants, but I think it was me who came away inspired.

Several participants asked me to share my speech transcript so they could share with others after the conference ended. I thought maybe I could do one better and share my words with my entire ICN community. So, enjoy and I hope this reinvigorates you in our fight for better care and outcomes for young people with IBD.


Top Ten LOOP Posts of 2018

LOOP is making an impression on the IBD community!

We enter December 2018 with 60 new posts, shared by 40 ImproveCareNow community members! And 27 people posted for the very first time in 2018. Posts covered topics like: IBD research, mental health, new PAC member intros, ICN event updates, what I wish you knew, and many honest accounts of life with IBD.

We are thankful for each and every one of these stories. Here are the top 10, most viewed, posts of 2018!


Slow Down & Smell the Roses

When parents watch their first child head off to their first job - out of state - understandably there will be hugs, tears, and teachable moments. The night before I left home and traveled 477 miles away to start a job in Atlanta was Christmas. As my girlfriend, Emma, and I were saying goodbye to each other - there were definitely tears. And it was during this emotional moment that my Dad came over and wrapped both of us up in a hug and said, “it’s not going to be easy, but it’ll be okay.” Just another of life’s hard moments, made a little better with the sharing of a little parental wisdom.


Older, not wiser

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In 2012 I wrote It’s OK to say it sucks! I was rereading that post and thinking that even though I’m older, I’m not necessarily any wiser. Here’s what I mean.


This is Why I ImproveCareNow

Have you ever been so annoyed by people you just want either to slap them or crawl under a rock and hide from them? It could be because they don’t know when to stop talking, or they constantly complain about such petty things. Sometimes you find yourself wondering how the heck they got this way! I have been mulling this over a lot lately because, no matter how annoying people can be, I also know that each individual was made unique for a specific purpose. Hear me out…

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PAC Summer 2016 Recap

PAC co-chairs, Bianca and Alex, are on the blog today to recap some of the amazing things this group of patient advocates has accomplished this summer. The PAC was created in 2011 with the intent to bring IBD patient advocates together to change IBD care for and with the ImproveCareNow Network. Over the years the PAC has evolved and grown and we've highlighted this in our new timeline. This summer the PAC made strides towards becoming a bigger, more engaged and effective council and we're excited to share how we're doing it and what it means for the future.

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Social Media Flare

It’s a scene out of a typical relaxing Sunday afternoon: you’re sitting on the couch, watching your favorite TV program. There’s some occasional napping thrown in there, and it’s like you don’t have a care in the world. After the stress and busyness of school or work it makes for a restful and relaxing afternoon. To an outside observer, life during an IBD flare might look like exactly that.


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.


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