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 🔥

We've been getting to know ICN staff members through our imPACt ImproveCareNow network series (last time we talked with Chris Keck about why storytelling matters). In this episode, join Caitlyn, Vanessa and I (Fionna) for a chat with Sydney Bogardus who supported the PAC and the PFAC (Patient/Family Advisory Council) for several years before taking on another role in ICN.

Join me (Fionna) and my fellow PAC members, Christian and Shira for our conversation with the hosts of the NASPGHAN podcast, Bowel Sounds, Dr. Temara Hajjat and Dr. Jason Silverman. We discuss what we wish providers knew from the patient perspective and uncover what providers wish patients knew. 

Join me (Vanessa), Hannah and Fionna for our conversation about IBD during different stages of schooling. Between the three of us, we have lived experiences with both Crohn's disease and ulcerative colitis, with being diagnosed at different life stages (during early education and in high school) and with balancing high school, college and grad school with IBD.

“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.

Pediatric patients with IBD can have challenges with fatigue (feeling tired a lot of the time) and difficulties with sleep. While fatigue and sleep are known to be important factors in supporting optimal psychosocial and medical outcomes in pediatric IBD, it is unknown how these topics are talked about in IBD care with patients.

A new research project aims to learn more about Sleep & Fatigue in Pediatric IBD.

Medications and biologic drugs are often a big part of managing IBD. Shira and I (Fionna) were texting about our personal experiences with meds and biologics when we realized others in the IBD community might benefit from being able to listen in on our conversation. So, we decided to make a podcast episode about it! 

Hello everyone - it's Fionna from the Patient Advisory Council communications team. I'm excited to share that after a bit of a break the PAC is back with an exciting new episode of our imPACt podcast where we chat about a commonly used, but often not discussed, IBD nutritional therapy.

The PAC released episode 1 of our imPACt podcast on February 28, 2021. Join me (Vanessa) and my communications co-chair, Fionna as we celebrate one year of imPACt and chat about some of our favorite parts of podcasting, share which episodes we like the most, and talk about where the podcast may be headed in the future.

Join me (Fionna), Shira and Caitlyn as we talk with special podcast guests - Dr. Hilary Michel and Dr. Ashish Patel - about patient-centered care from both the provider and patient perspectives. 

"Knowing what a patient's goals are, what their values are, what's important to them and trying to shape how we take care of that person with those things in mind." - Dr. Michel

"All coming to an agreement on how we want to move forward in that patient and family's care." - Dr. Patel

"It's important that we also know that as owners of our bodies we are also the experts, and I think patient-centered care does a really important job of integrating that." - Shira