ImproveCareNow PFAC


How to begin doing research with ImproveCareNow

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.


A Thank You Letter to Jill Horan

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). 


The Spark That Set The Flame

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. 



IGNITE - Creating a Family

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 🔥 


Episode 14 of the imPACt podcast - IBD & Patient-Parent Relationships

Check out this episode of imPACt, where PAC and Parent Working Group members chat about how they've experienced the evolution of the patient-parent relationships and what this looks like in the context of IBD care.


IGNITE - Taking the journey together.

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 🔥 



I will never forget the day my son’s symptoms began

My name is Ann, and I will never forget the day my son's symptoms began. There were six of us. We had all gone out to enjoy a Chinese dinner. The time was the summer of 2009. Later that night, Richard who was 8 years old, started vomiting. We thought he probably was reacting to something in the restaurant food, but none of the rest of us had a problem. This was the start of Richard’s trouble with Crohn’s disease.


Creating an ICN-like learning network for autoimmune liver disease

Hi, I’m Jane, “Mom” to beautiful 20-year-old Nicole. I serve as a parent representative at CCHMC for ImproveCareNow (ICN) and our local network called: IBDevoted. I am also a Board member of the local chapter of the Crohn’s & Colitis Foundation. In my professional career, I work for a large Catholic healthcare system handling medical malpractice cases. While I’m not technically a healthcare professional, I joke that “I play one on TV”!


1  2  3  4  5  6  Next →

Built by Veracity Media on NationBuilder