My name is Stacy and I am Co-Chair of the Children's Mercy IBD Patient Family Advisory Council (or "IBD PFAC" for short). I have twin boys and one of them is a patient of the Children's Mercy IBD Clinic. An interesting fact about me is that I am also an RN and I have worked for the Veteran's Hospital Administration for the past 17 years.

Inspiring, honest and motivational. Those were the words used to describe IBD parent, Ildiko's #IgniteTalk. In it she reminded us all of the critically important and unique perspective that parents and caregivers of young people with IBD bring to the discussion. She asked us to remember that while we collaborate on the big challenges that IBD presents, there are also small things we can do to make a difference right now (like watching our language). And she issued a call to action for us to work together to make truly meaningful progress in outcomes for kids with IBD and also to really believe that radical, transformative progress is possible.

Be inspired by Ildiko's #IgniteTalk 🔥

The ICN Research committee encourages everyone to submit research proposals even if you think the research process might be too intimidating or difficult. Because when we ask and answer questions about IBD together as a community, we can get even better results.

Let’s all stop to take notice of one of the truly wonderful people around us: Jill Horan. The following reflection was written by incoming parent co-leaders, Heidi and Ildiko, as a celebration of the dedication, creativity, passion and kindness that Jill has brought to her careful tending of the ImproveCareNow Parent Working Group (which has announced a new name, by the way). 

I was a reluctant participant - I was perfectly content to let others lead the way. It wasn’t that I didn’t care, I just didn’t think I had anything of significant value that I could share. That’s not false modesty, I was literally fumbling through trying to understand what it meant to have two kids with a chronic disease that had no cure. That was until I began to partner with my local IBD care center and the larger ImproveCareNow community. 

Do you need an IBD family? Martha knew instinctively that she did, from the moment her family first started their journey with Crohn's disease. So, she volunteered to start a pediatric family support group at her local care center. It took some time for the group to gain traction - nine months, in fact. But thanks to Martha's "pleasant persistence" and the active involvement of their pediatric GI provider, the group is now thriving - supporting and encouraging each other (both the parents and the kids), working side-by-side with patients and providers to better care, and offering newly diagnosed families a safe and welcoming place to find their footing surrounded by people who truly understand. As Martha puts it, "I had no idea who I would meet or how we would all interact, but I knew that if I needed an IBD family, others did, too."

Be inspired by Martha's #IgniteTalk 🔥 

Heidi's #IgniteTalk is a powerful reminder that while IBD may be part of your life, you don't have to do it alone. There is value in connecting with others to give and receive support, in #TalkingAboutIBD because every story matters and has the power to change someone else's story, in offering what you have learned on your journey in the hope that it can help another person outsmart IBD.

Be inspired by Heidi's #IgniteTalk 🔥 

Ella and I want to thank you all for your incredible response to our first blog post where we introduced the IV Sweatshirt Project! If you haven’t read our story yet, we encourage you to start there – in it we share about Ella’s diagnosis with Crohn’s disease, our journey to find a treatment that worked for her, and how her experience ultimately led us to create something together to help kids like her stay warm and comfortable while getting infusions.

After a few trials and some delays due to COVID-19, we are excited to share that we have received a solid prototype of our IV sweatshirt design and have been able to test it at our infusion center!

At April’s Live Online Community Conference (LOCC), Dayton Children’s introduced the Should I have IBD surgery? shared decision-making webtool and Dear Ostomy video. These resources are key components of an IBD Surgery Shared Decision-Making Toolkit that the Dayton team created using an ImproveCareNow (ICN) Innovation Fund award, made possible with support from the Clare Foundation. The toolkit generated a lot of excitement and questions, so project leaders, Dr. Kelly Sandberg and parent Shellie Doub took some time to answer to the most frequently asked questions.

Hi, my name is Ella and I am 12 years old. I am currently a 7th grader who likes spending time outdoors and hanging out with my friends and family.

When I was nine years old, I started feeling sick. I was nauseous all the time, had trouble eating without pain and was so tired I could barely get through the school day. By the time summer arrived, I couldn’t even walk an entire block without feeling ill. We didn’t know how serious it was until I was diagnosed with Crohn's disease at age 10. By then, I had stopped growing and was severely underweight. It was very difficult for me, especially in the beginning. The first rounds of medication were not successful; I couldn’t tolerate them. In August of 2017, I began receiving IV infusions (Remicade) at Yale New Haven Children’s Hospital. I am now in remission and feel great but going for IV infusions as often as every four weeks, as well as taking oral medications, is my new “normal” and the inspiration for an innovative project I’m working on.