ImproveCareNow Community_conference


IGNITE - It is OK if your illness changes you.

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 🔥



Spring 2024 Live Online Community Conference - Together We Can

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. 


Partnering for better pediatric IBD outcomes

ImproveCareNow (ICN) believes that when patients and caregivers are true partners in the design and delivery of their IBD care, we can achieve even better outcomes. One way our learning health network fosters this commitment to partnering with our pediatric IBD families is through our Community Conference scholarship program. Scholarships allow patients and/or caregivers to attend our in-person meetings at no cost to them.


IGNITE - The impact and importance of listening

Kera has been seeking information and making tough decisions from a young age. She was just 10 years old when she, with support from her Mom and Dad, made the choice to use nutritional therapy to treat and manage Crohn's disease after surgery. Her path to emergent surgery, and ultimately her diagnosis, was long and paved with painful symptoms and emotional trauma. Some adults dismissed her pain as "normal" or even lies. In her deeply honest #ignitetalk, Kera reminded us that life is full of inflection points...the moment a stomach bug morphed into chronic pain, the moment her pain was validated and she learned she had Crohn's, the moment her care providers really listened and answered her questions, the moment she realized that succeeding at nutritional therapy helped her physical health but exacted a huge toll on her mental health, the moment it became clear her issues with body image and eating were not safe or healthy, the moment she discovered the Patient Advisory Council and people who she didn't have to 'downplay her trauma around', the moment (which came just before she took the podium at #ICNCC23F) when her PAC co-chair, Shira, told her that she is allowed to take up space.

If reading about or listening to real experiences with eating disorders and/or body dysmorphia does not serve you, please protect your own mental well-being by skipping this post and video.

Be inspired by Kera's #IgniteTalk 🔥


A Void...Filled

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 - I made a conscious choice to become a part of something

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 🔥


Fall 2023 ImproveCareNow Community Conference - Building Our Shared Future

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 - A Parent's Perspective on Healthcare Learning Networks

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 🔥


IGNITE - Community and having a relationship with patients is important

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 🔥


Spring 2023 Live Online Community Conference - Foundation For Success

ImproveCareNow Spring 2023 Live Online Community Conference. April 27 & April 28. Foundation for Success.

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


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