My name is Stacy and I am Co-Chair of the Children's Mercy IBD Patient Family Advisory Council (or "IBD PFAC" for short). I have twin boys and one of them is a patient of the Children's Mercy IBD Clinic. An interesting fact about me is that I am also an RN and I have worked for the Veteran's Hospital Administration for the past 17 years.

A challenge I experienced with having a newly diagnosed child with IBD was not having an IBD specialist in our hometown of Wichita. There are only 2 pediatric GI providers in Wichita, and I felt they were not equipped with all of the information and resources that my son would need. This was challenging because I didn't know where to turn to for more help.

I wanted to change providers and find an IBD specialist for him. I felt it was important to act quickly because medications were not working, we needed further education, and we needed more support.

I started doing research through the Crohn's & Colitis Foundation website and I found a Virtual IBD family education day through the Cincinnati Children's Hospital. My son, husband, and I attended that virtual education day and learned so much. We learned that there are children's hospitals available with specialized multidisciplinary IBD teams. This was very exciting news, so I started searching for the closest children's hospital to us and found the IBD Team at Children's Mercy Kansas City. I contacted them immediately and we had our first Multidisciplinary IBD Clinic virtual appointment within 2 weeks.

Upon switching to Children's Mercy, we learned about ImproveCareNow and the Children's Mercy IBD PFAC. I signed up and have been receiving information from ICN for about a year now. I joined our local IBD PFAC last year because I wanted to share my family's experiences and see how I can help other IBD families who share some of the same struggles as ours.

A couple months ago, I became the Co-Chair of the IBD PFAC. I'm hoping that through the work of the IBD PFAC along with the IBD clinic, we can inspire other hospitals or IBD clinics to ensure they have a strong patient and family involvement in their clinics - so everyone knows where they can turn to for more help.


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"You will find parents who are committed to improving the lives of IBD patients and families. We work side-by-side with the patients and doctors to better care for these kids." - Martha 💚💙
Everything we do in ImproveCareNow is magnified by the efforts of thousands of other improvers, and together we bring about a better quality of life for many. Here are some actions you can take, and invite others to join you in taking:
💙 young patients (14+) with IBD can join the Patient Advisory Council - "Being part of the PAC helps me remember that I'm not alone in this journey." - Rhea 
💚 caregivers of young people with IBD can join the Parent/Family Advisory Council "I was astounded by the instant bond established with parents I had never met. Every conversation provided me with strength. It ignited another purpose in my life." - Maria
💙 make a tax-deductible donation to support ImproveCareNow - "As a 501c3 non-profit, ImproveCareNow is proud to use every dollar donated to advance our mission of improving the health and care of children and adolescents with IBD." - Kristin Howe, Executive Director
💚 stay #InTheLOOP with IBD stories on the ICN blog"Sharing stories and experiences is affirming and validating. Our stories reach others and they help, which is the most wonderful part of being involved with ImproveCareNow." - Quint 
💙 download & use free, co-produced IBD resources - "Physical resources provide patients with actions that we can take toward bettering our quality of life, as well as our current and future care." - Quint
💚 join our CIRCLE -"Resources we found in CIRCLE eNews do not just focus on physical health, but also on critical areas like social-emotional needs, nutrition, back-to-school planning and mindfulness. These are valuable tools for my son to remain healthy." - Lisa 

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