LOOP Blog

It’s been a busy year for the Patient Advisory Council (PAC). Twenty-eighteen has seen the PAC evolve to be more dynamic and engaged than ever before. The progress and developments made in our group of 50+ patient members include substantial leadership changes and more toolkits than I can even remember. 

As co-chair of the Patient Advisory Council (PAC) Advocacy task force, I am excited to announce our new Accommodations Toolkit! Becky and I (with lots of support from the entire PAC and ICN social workers) developed this toolkit as a resource to help patients, parents and providers better understand and navigate the accommodations process.

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!

Next Tuesday is #givingtuesday - a movement to create an international day of giving as we enter the holiday season. This #givingtuesday we hope you'll keep ImproveCareNow in mind as you choose the organization(s) you plan to support. Why give to ImproveCareNow?

My name is Kathy Rygg, and I’m the parent partner at Children’s Hospital & Medical Center in Omaha in Nebraska. My son, who is now 11, started having symptoms at two but wasn’t diagnosed with ulcerative colitis until age five. 

Thanks to the generosity of the ImproveCareNow community, and the hard work and dedication of our parent and patient partners, 30 members of the Parent Working Group and Patient Advisory Council joined us at the Fall 2018 Community Conference in Chicago. It’s been two months since we returned to our respective communities, and some parent and patient partners wanted to share their reflections on what they learned while at the conference and how they are using this at their local center to improve care.

Learning isn’t always fun but accepting that you live with a chronic disease can be downright terrifying. Whether we like it or not, we must do our best to become familiar with the ins and outs (no pun intended) of a life where IBD plays a huge role.

A few months ago, I graduated from the Umeå Institute of Design in Sweden, with a master in Advanced Product Design. For my thesis I attempted to translate my own Crohn’s disease experiences into something which could help others. I think I succeeded and would love to share the outcome of my master thesis – Pling – with everyone.

These three words (collaboration, connections, community) come to my mind when I think of ImproveCareNow (ICN). And they represent three reasons I love leading our Family Advisory Council and sharing ICN with the families of Dayton Children’s. These are my people. They understand my life. They, too, know what it’s like to parent a child with IBD.

It is for all of these reasons that I am thrilled to host Virtual Community Conference (VCC) Watch Parties – so we can collaborate, connect and feel like we’re part of a community.

My name is Missy and I am a new member of the ImproveCareNow Board of Directors. When my son was diagnosed with Crohn’s disease in the fall of 2016, one of the handouts I received from our care team at Nemours Jacksonville was a flyer about ImproveCareNow (ICN). That night I signed up for the Parent Working Group and the ICN newsletter.

Sometimes I feel like people expect me to always act a certain way because I have Crohn’s. Maybe you’re thinking I mean people understand and expect me to always be tired or running to the bathroom. But that’s not it; it’s that I feel like they expect me to be happy, bubbly, positive – like I am when I’m advocating.