For so many years I remember being this young girl surrounded by so many people but feeling so alone… different than everyone else. I used to never acknowledge that I had a chronic illness unless I had to. When I would get stomach pain, have frequent need for the restroom, or was unable to do what others were doing, that’s when I felt so different…so alone. I was always the one with the (not typical) belly pain, that couldn’t eat anything, or that kept running to the restroom…always feeling singled out.

Ignite Talks have become a tradition at ImproveCareNow Community Conferences. There is always so much enthusiasm for these brief and breathtaking personal narratives. And we continue to feel gratitude and awe for the improvers who speak from their hearts and share their real life experiences with pediatric IBD. We are grateful to Tomiyo for her story about caring for her daughter with severe IBD and the emotional toll it had on her. Speaking to a live audience was an act of real bravery for this introverted parent, and it represents a promise that Tomiyo kept to herself to be involved and to help other caregivers who might be suffering like she did. Tomiyo's ignite talk highlights the importance of support, community and advocacy for IBD caregivers and the power of stories to drive us all to create a better for future for those who need it most. 

Be inspired by Tomiyo's #IgniteTalk 🔥

We are excited to be hosting our Fall 2023 Community Conference in Louisville, KY from October 25 to October 27. We look forward to engaging with healthcare providers, patients, parents/caregivers, researchers and improvers from across ImproveCareNow to all teach and all learn about our ongoing pediatric IBD research and improvement efforts. Download our draft agenda to preview the full conference schedule ⬇⬇

Ignite Talks are a true highlight of ImproveCareNow Community Conferences - whether we are meeting in-person or live online. This spring, at our Live Online Community Conference, we were honored to listen as Jane Weyer shared her personal story as parent to a child diagnosed not only with Crohn's disease, but also Primary Sclerosing Cholangitis (PSC) - an autoimmune liver condition affecting around 30,000 people in the US. Jane, and her daughter Nicole, didn't have the information or resources they wanted at the beginning of their PSC journey. So, they rolled up their sleeves, leaned on the strong foundation of connection and improvement built by the ImproveCareNow Learning Health Network, and together with other visionaries founded A-LiNK (the Autoimmune Liver Disease Network for Kids). A-LiNK Connections, the caregiver/patient community, was established to collaborate, advocate, support, and educate families on this journey with them.

Be inspired by Jane's #IgniteTalk 🔥

Imagine being diagnosed with a chronic illness in the midst of a global pandemic and lockdown. How does a young person develop resilience and thrive when facing incredible health challenges in isolation? How can they connect with people who understand, who can normalize IBD and offer support and validation about experiences that are still very stigmatized? Not only was Hannah able to develop resilience (on her own terms) and thrive (in the face of difficult surgeries and complications), she also found a community in ICN and the PAC and has grown into an incredible patient advocate. In her #ICNCC23S Ignite Talk, Hannah shares the story of her diagnosis, what resilience and community mean to her, how asking questions and getting to know patients can open the doors to more inclusive and whole-body care.

Be inspired by Hannah's #IgniteTalk 🔥

On Thursday, April 27 and Friday, April 28, ICN is hosting a Live Online Community Conference (LOCC). Sessions begin on April 27 at 10 AM ET (9 AM CT, 8 AM MT, 7 AM PT) and continue through 4:50 PM ET. Sessions resume again on April 28 at 10 AM ET and continue through the early part of the day, with a wrap up scheduled at 2:30 PM ET. 

All are welcome to join us for this interactive, online event and we are proud to be able to offer FREE registration to patients and parents/caregivers. When you register for the LOCC you have the option to attend sessions live or enjoy them later when it is convenient for you. All registrants will receive 60-day access to session recordings which will cover topics such as: diet & IBD, new therapeutics, whole person care, data driven improvements in care & outcomes, IUS, healthcare equity, pediatric IBD research, transition clinics, improving injection experience, A-LiNK, patient empowerment, new Ignite Talks. 

What if your closest friend had a habit of interrupting your plans and not listening when you begged them to stop? You might might wish to end that friendship. But, as Mahalakshmi points out in her #IgniteTalk, which she shared at both our in-person and our virtual community conference this fall, when "friend" is really a metaphor for IBD there isn't really a choice. 

Be inspired by Mahalakshmi's #IgniteTalk 🔥 

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 🔥

Jane Weyer is a member of the ImproveCareNow Parent/Family Advisory Council and also an A-LiNK Connections Parent Co-Lead. She joined us at our Community Conference this September to reconnect with colleagues, friends and ICN family in person for the first time since 2019. Jane shared her own heartfelt reflection, as well as sentiments from PFAC members, about their time together in Dallas.

“If you just sit and give folks a list of facts, they can debate those facts or try to refute them. They can't debate your story. Because it's your story." - Chris Keck on the imPACt Podcast 

Join me (Vanessa), Becky and Fionna for our conversation with Chris Keck from ImproveCareNow. We discuss storytelling - particularly personal narratives - and why stories matter.