It’s been nearly a decade since the first time I spoke as a patient advocate within ImproveCareNow. Joining ICN’s Patient Advisory Council (PAC) has given me a platform to share my story and vision for the future of IBD care. I have had the privilege of being in the PAC for over five years, serving as a PAC Co-Chair, and in my current role representing patients on ICN’s Board of Directors. This entire time, my patient advocacy has been for a medical audience, whether that be members of our ICN community or other learning health networks.

Recently, I had the opportunity to extend my patient advocacy to the policy world in hopes of making an even greater impact.

@ICNPatients collaborated with the ICN Social Workers & Psychologists (SWAP) group to create and share information about medical traumatic stress, including common symptoms, potential causes, coping strategies, advocacy statements, and a resource list. Take a PAC Moment to learn about medical traumatic stress from the patient perspective.

Tune in as Caitlyn and Fionna chat with professional runner, Grayson Murphy (@racin_grayson) about running (and really all athletic pursuits) and IBD.

We are excited to be hosting our Fall 2025 Community Conference in Orlando, Florida from September 17 to September 19. 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 ⬇⬇

Hi! My name is Isabella, and I was diagnosed in October of 2023 with Crohn's disease. I began my treatment with Remicade infusions which helped bring my inflammation levels down. Unfortunately, I was still experiencing symptoms caused by a stricture in my ileocecal valve. This led me to visit a dietitian who recommended a dietary therapy called the Specific Carbohydrate Diet (SCD). With the SCD, I saw extreme symptom improvement and began to live a life free from the daily struggle of sickness and stomach aches. In June of 2024, I also underwent an ileocecal resection to remove all stricturing. Since then, I have been in total remission, and living a happy and healthy life, enjoying hobbies such as cooking, volunteering in my community, working at a local children's salon, and spending time with friends!

Hi everyone. My name is Elizabeth and I've been a member of the Patient Advisory Council (PAC) for about a year now. I'm excited that I will soon be serving the ICN community as PAC Co-Chair! Here's a bit about me and what I hope to work on during my time co-leading the PAC, and what I see as my main challenge. 

For families navigating the complexities of chronic illness, Maggie's story offers a powerful reflection. Before her Crohn's diagnosis at sixteen, Maggie, a vibrant "theater kid," found solace and strength in the Hamilton lyric: "I am the one thing in life I can control." This deeply personal belief in her independence was profoundly challenged when her own body became unpredictable. What happens when the very foundation of self-reliance is shaken by an illness that defies control? At our Spring 2025 Live Online Community Conference, Maggie bravely shared her journey, offering insights into adapting to a new normal, redefining strength, and discovering that true resilience often lies not in control itself, but in the courageous choice of how to respond when life takes an unexpected turn. Her story is a testament to the power and resiliency of the human spirit within our shared chronic illness community.

Be inspired by Maggie's #IgniteTalk 🔥

My name is Adrian, and I was diagnosed with Crohn’s disease when I was 9 years old. For several months before I was diagnosed, I was slowly losing weight, growing paler, and having intermittent stomach aches. I would be in terrible pain, fall to the floor, and then it would pass almost as quickly as it came on. Neither my parents nor I thought it was anything serious at first. Initially my mom thought maybe I was lactose intolerant, so we cut dairy out for a while, which was a disappointment because my favorite foods were cereal and yogurt. Removing dairy, however, did not help.

Hi, I am Samantha and I have ulcerative colitis. I was diagnosed a little over a year ago and since then I have been trying to find a way to manage my symptoms and live a healthy life. I am looking forward to starting college where I will be studying aviation, which is a huge passion of mine.

My greatest struggle related to my UC is finding ways to not let it affect my daily life.

Hello, I am Caroline! I’m 20 years old and live with a feeding tube. Since I was diagnosed with Crohn’s disease at the age of 10, my experience with feeding tubes has taken many forms. What can that look like? There are a variety of types of tubes which include nasal and surgically placed tubes, with many different reasons and uses such as nutrition, hydration, medication, or drainage. For me, the process of learning more about feeding tubes with my providers started when I was 12 years old.