In a matter of days, Caitlyn went from being a full-time student athlete (following her dream of running at a D1 college) to being a full-time patient (diagnosed with IBD and severe visceral hyperalgesia). She went from balancing a rigorous training schedule and school, to managing doctors appointments, meds and nearly constant pain and fatigue. In the midst of this, she turned 21 and was pushed to find an adult care provider who would take her complicated case. She wanted someone to fight for her, who took time to understand how her illness was affecting her life and mental health, who recognized how hard she was fighting and who would support and advocate for her. In time, she found those people. With new treatments, her health began to turn around and she was able to return to school. However, her collegiate running career had come to an end. "I found myself grieving for my past life. For a body that I no longer had."

Once known affectionately as the "runner girl," who was Caitlyn without running? It turns out she is many things! Read her story to find out.

Be inspired by Caitlyn's #IgniteTalk 🔥

On Thursday, April 18, 2024 ImproveCareNow is hosting our Spring Live Online Community Conference (LOCC). Sessions will run from 9:30 AM ET (8:30 AM CT, 7:30 AM MT, 6:30 AM PT) to 6:00 PM ET. Everyone is welcome and encouraged to join us for this interactive, online event and we are proud to be able to offer FREE registration for all patients and parents/caregivers. 

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 🔥

ImproveCareNow (ICN) will move to offering one in-person Community Conference and one Live Online Community Conference (LOCC) each ICN fiscal year. This hybrid conference model will allow the Network to reach and serve a large and distributed community of clinicians, parents/caregivers, patients, researchers & improvers to collaborate and improve care processes and outcomes in pediatric IBD.

The ICN community has benefited from increased and broader participation in our LOCCs over the past several years. We recognize, however, the invaluable connections that are made when we come together in person. We hope that this new model of alternating between in-person and online conferences will enable more participants to engage with each other in the ways that make the most sense for them, to advance our shared mission. We will use these first few years of this new cadence as a test and adapt as needed based on community feedback. 

Kristin Howe, President & Executive Director, ImproveCareNow

Have you ever wondered what a doctor might be thinking or feeling when you open up about what's going on physically and emotionally because of IBD - the good, the bad, the embarrassing, the frustrating? When they deliver an IBD diagnosis to a family? When they want to be a source of answers? During her #IgniteTalk at the Fall 2021 Live Online Community Conference, Dr. Rana Ammoury let us peek inside her experience as a pediatric GI and an ICN participant for the past seven years. Her story, beautifully written and delivered, is a genuine reminder of the power of vulnerability, humanity, community and hope. 

Be inspired by Rana's #IgniteTalk 🔥 

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 🔥 

When Shira joined the Patient Advisory Council - in October 2020 - she wrote that she was looking for a place where she could use her voice to influence the quality of care other people receive - to change someone else's life for the better. Since then, she has set about doing just that - co-chairing the PAC's Advocacy Taskforce and joining the imPACt podcast where she has contributed to patient-led discussions on topics ranging from Parent-Patient Relationships to Arthritis to Queerness & IBD. In her Fall 2021 Live Online Community Conference Ignite Talk, Shira brought us deeper into her IBD journey by sharing a raw and beautiful account of her own self-inquiry and discovery, of learning to lean in during the dark moments and hold space for the hard feelings IBD brings. She challenged us, as she has challenged herself, to acknowledge that, yes, IBD is a burden and it brings a certain loss of control, but it does not mean the loss of one's happiness or identity.

Be inspired by Shira's #IgniteTalk 🔥 

Dr. John Grunow was one of the first pediatric gastroenterologists to join the ImproveCareNow Network - 15 years ago. He's been a dedicated improver ever since. Recently, John retired from active clinical practice but continues his work with ImproveCareNow. We are so grateful that he agreed to share his story in our very first clinician ignite talk - at the Fall 2021 Live Online Community Conference. Thank you, John.

Be inspired by John's #IgniteTalk 🔥 

This week's imPACt podcast episode is all about the upcoming Fall 2021 ImproveCareNow Live Online Community Conference!