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 🔥 

Heidi's #IgniteTalk is a powerful reminder that while IBD may be part of your life, you don't have to do it alone. There is value in connecting with others to give and receive support, in #TalkingAboutIBD because every story matters and has the power to change someone else's story, in offering what you have learned on your journey in the hope that it can help another person outsmart IBD.

Be inspired by Heidi's #IgniteTalk 🔥 

Fionna is an active member of the Patient Advisory Council, and is currently co-leading their communications taskforce. In this role, she is collaborating with other PAC members and ImproveCareNow to bring the stories and voices of the PAC to even more people in new and exciting ways. This spring she helped to launch the imPACt podcast, which is a new way to connect with and listen to young people talking about life with IBD. It is through the PAC that Fionna was recently able to tap into support, understanding and validation as she coped with a UC flare. She credits the PAC and this experience with helping her shift her mindset about healthy resilience, exploring the benefits of opening up and being vulnerable, and learning how to be flexible and give herself grace during tough times.

Be inspired by Fionna's #IgniteTalk 🔥

Christian is co-chair of the Patient Advisory Council and a young black man living with Crohn's disease. He delivered a powerful #IgniteTalk at our Fall 2020 Live Online Community Conference. Read a written version of Christian’s Ignite Talk below:

From her home office, Catalina spoke clearly and with great conviction, delivering her narrative directly to…her computer screen. Many of us have become accustomed to hearing Ignite Talks delivered to a packed plenary room at our in-person Community Conferences – and the effect these personal stories have is often palpable. Though it was not the original plan, Cat’s words flowed from her location in North Carolina across hundreds and even thousands of miles, reaching ImproveCareNow community members as they joined our first-ever Live Online Community Conference from their homes and offices. While the distance between was indeed great – Cat’s words drew us in close and (as Ignite Talks tend to do) reignited the passion we all feel for the work of ImproveCareNow - of improving health and care for kids with IBD. And from across the miles, the effect of Cat's words were still palpable:

“Incredible Cat!! Words do not do justice to what you are conveying to all of us - the village of ICN!”

“Inspiring for us all! Makes you want to try even harder!”

“You are incredible Cat!!! Your strength and advocacy is inspiring!!! THANK YOU!!!”

“I'M CRYING”

“You remind us why it is so worth it to keep fighting and working. Thank you!”

“Cat gives me chills.”

*stands up and claps*

“Really beautiful. As a caregiver, I feel your passion and share your sense of purpose. Very well done.”

Experience Cat’s Ignite Talk:

"Everyone's story matters, and is important, and can change someone else's story!" - Sami Kennedy

Stories matter! They connect us; build awareness, understanding and empathy; they unite us in our pursuit of a common goal and sometimes they even ignite (or reignite) our passion for the work that lies ahead. When PAC member Maddie shared her story – her #IGNITETALK – at our Fall Community Conference the energy in the room was palpable. Here’s the transcript of her talk.

“NO ONE can prepare a parent to hear that their child has to live with a lifelong medical condition and that there is NO CURE.” - Maria Lester

Maria has lived through this twice. The first time was when her oldest daughter was diagnosed with Type 1 Diabetes at 4-years-old. Then, nine years later her youngest was diagnosed with Crohn’s disease, Celiac disease, and Primary Sclerosing Cholangitis at 6-years-old. After each heartbreaking diagnosis, Maria remembers reassuring her children that everything would be OK. And in those moments, she found her purpose – she was going to do everything in her power to make sure it would be OK. She dove in headfirst, connecting with disease communities to get support and learn all she could about these diagnoses. She said yes to opportunities to partner - to contribute her time and talent to improve the lives of not only her children, but other families walking the same path she has walked. Through this she has learned a powerful lesson – “that when you find your purpose, you realize there is a cause bigger than yourself and shows you the strength you never thought you had.”

Below is Maria’s full #IGNITETALK from our Fall 2019 Community Conference. As you read her words, ask yourself: what is my purpose?

Recently, I had the pleasure of sharing my story at a Learning Networks conference here in Atlanta. When you hear the term ‘learning networks’ just think ImproveCareNow, but for other chronic illness populations. This particular conference was unique because it brought four unique, budding learning networks together for the first time. The whole experience was extremely valuable, and it was amazing to see four learning networks that are at different stages, ranging from just starting out to those that have been doing it for a while. Sometimes in ImproveCareNow I find myself wishing change happened more quickly, but the experience helped remind me that we have come so far already. The purpose of my speech was to energize and inspire the participants, but I think it was me who came away inspired.

Several participants asked me to share my speech transcript so they could share with others after the conference ended. I thought maybe I could do one better and share my words with my entire ICN community. So, enjoy and I hope this reinvigorates you in our fight for better care and outcomes for young people with IBD.