Posted by ImproveCareNow™ on October 19, 2022
Jane Weyer is a member of the ImproveCareNow Parent/Family Advisory Council and also an A-LiNK Connections Parent Co-Lead. She joined us at our Community Conference this September to reconnect with colleagues, friends and ICN family in person for the first time since 2019. Jane shared her own heartfelt reflection, as well as sentiments from PFAC members, about their time together in Dallas.
When I was given the opportunity to attend the Fall ICN Community Conference this year, I must admit that I selfishly and excitedly agreed to go because I knew that I needed a lift. So, I took a few days off of work and arrived in Dallas early on September 21, 2022. I was so eager to see my friend Maria that we met at the airport. Maria and I met a few years ago at an ICN conference - we became fast friends and kindred spirits when we realized our daughters share two autoimmune diseases: Crohn’s Disease and Primary Sclerosing Cholangitis.
At the airport, Maria and I picked up a new Parent/Family Advisory Council (PFAC) parent who was attending her first ICN conference with trepidation and I knew immediately I was there for a reason: to share my experience, strength and hope. It’s what I have to offer as a mom, an advocate and a PFAC member.
So, there it began and we were off to the ICN conference where parents, patients, caregivers and providers started to arrive from all over the US and Canada. And when I was with “my people” I felt like I was home. (Thank you, Jill 💚💙) We gathered, talked, laughed, cried and shared our stories and new friends became old friends in no time at all.
As I watched the group assemble and get to know one another, it was easy for me to remember why ICN has been so successful - because a collaborative has been created with a singular purpose, where clinicians, researchers, parents and patients are ALL empowered to learn and continuously improve to bring about more reliable proactive IBD care for our kids. Over the next few days we came together as a community and in break-out groups for outstanding sessions to learn and grow, and tackle hard topics. And at the end, I felt that the time had flown by much too quickly, but I was ready to return to Cincinnati full of gratitude, hope, ideas and enthusiasm to continue my work in ICN/IBDevoted and A-LiNK.
After the conference PFAC members shared their experiences with each other. These touching remarks say it all:
💚 I haven’t laughed, cried, thought, hugged, and felt so completely at ease in such a long time!!
💙 Our group is something special - A safe place to land where looks and a knowing nod says it all.
💚 We have the opportunity to leverage our collective experiences, ideas, and expertise to help make significant change. I am beyond proud to know you all!!
💙 I really needed to find this group.
💚 Thank you ALL for being so welcoming and what I needed to find.
💙 I haven’t felt this sense of peace since the summer of 2019 when we received this diagnosis. Knowing you all are here and just understand it all, means the world to me. This week was a life changing experience for me which in return, can help us change the lives of the children we all love so much. We are stronger together. I appreciate you all so much!
💚 You all are teaching me how to be a better advocate!
💙 So grateful and honored to be part of this amazing group of talented, witty, compassionate, and beautiful moms. Your passion is what drives our PFAC train.
💚 The love, support, and compassion you all display is remarkable. Just knowing we are not alone on this journey is comforting.
Thank you ICN for bringing us together!
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Get #InTheLOOP with more posts by the PFAC on the ICN blog >>
In partnership with the ImproveCareNow Network and local Care Center teams, the PFAC empowers patients and their families to thrive in their lives by improving the quality and outcomes of IBD care. Get in touch with the PFAC about joining → improvecarenow.org/connecting-parents
Put in your time and energy on behalf of someone else. No effort is too small, because 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, or invite others to take, to get involved with ICN:
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Invite someone to 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
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Invite a patient (14+) to join the Patient Advisory Council - "Being part of the PAC helps me remember that I'm not alone in this journey." - Rhea
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Invite a parent or family member of a child with IBD to 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
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Invite someone to download 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
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Invite someone to 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
