ImproveCareNow (ICN) believes that when patients and parents/caregivers are true partners in the design and delivery of IBD care, we can achieve even better outcomes. One way our Learning Health Network fosters this partnership with our pediatric IBD families is through a Community Conference scholarship program. Scholarships cover the full costs for patients and parents/caregivers to attend our in-person meetings. 

Medical conferences have traditionally been designed just for medical professionals. Shifting this paradigm - offering enriching, content-focused meetings that engage and meet the needs of a diverse audience - is both a challenge and an opportunity. In ICN we are committed to continuously improving our conferences to better include all members of our community. Patients and parents/caregivers not only attend as full participants in our conferences, many of our sessions are also co-created and presented by these vital partners. 

Below are some reflections shared by patient & parent/caregiver attendees from our Fall 2024 Community Conference. If you would like to support this important work and bring more IBD family voices to our learning events, please make a donation to the Richard B. Colletti Family Fund.

This is Tori's story about her son's Very Early Onset Inflammatory Bowel Disease (VEO-IBD) diagnosis at just two years old. It's a story of misdiagnoses, frustrating dismissals, and the eventual discovery of a chronic condition that affects a growing number of very young children. More importantly, it's a story of resilience, hope, and the power of community. Enjoy Tori's powerful #IgniteTalk as she recalls the challenges and triumphs of raising a child with VEO-IBD and discovers how this journey has transformed her family and inspired them to advocate for others.

Be inspired by Tori's #IgniteTalk 🔥

As a public speaker, it can be challenging to embody positivity while talking about such difficult experiences. Leela struck this balance in her Ignite Talk at our Fall 2024 Community Conference; she led us into the darkest moments of her IBD story and then turned on the light. During her recovery from abdominal surgery, when the stress, fear, and pain was palpable and all she wanted to do was cry but couldn't because "if I did, my stomach would feel like lava," Leela's Mom never gave up on her or left her side. In a pivotal moment involving a 🐞 ladybug, Leela felt her Dad's words "This too shall pass..." spring into her mind. Those comforting words woke her up and she was hit with the realization that this was her defining moment; "a moment in your life that you look back on and it fills you with motivation to keep moving forward - a time in your life where you went...yeah, I did that!” 

Be inspired by Leela's #IgniteTalk 🔥

We are excited to be hosting our Fall 2024 Community Conference in Baltimore, Maryland from September 25 to September 27. We look forward to engaging with healthcare providers, patients, parents/caregivers, researchers and improvers from across ImproveCareNow to all teach and all learn, to share and develop new and innovative approaches to improve pediatric IBD care and outcomes, to further our research, and to build our community. Download our draft agenda to check out topics and sessions for this event ⬇⬇

Camp Oasis transformed our daughter and became an "oasis" in her IBD journey. I am honored to share my experiences as a parent and provide tips and takeaways to providers and parents about sending your child or teen to a safe and transformative place.

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. 

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.

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 🔥

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.