ImproveCareNow Parents


IGNITE - IBD is a marathon AND a sprint

Inspiring, honest and motivational. Those were the words used to describe IBD parent, Ildiko's #IgniteTalk. In it she reminded us all of the critically important and unique perspective that parents and caregivers of young people with IBD bring to the discussion. She asked us to remember that while we collaborate on the big challenges that IBD presents, there are also small things we can do to make a difference right now (like watching our language). And she issued a call to action for us to work together to make truly meaningful progress in outcomes for kids with IBD and also to really believe that radical, transformative progress is possible.

Be inspired by Ildiko's #IgniteTalk 🔥


Parent reflections on our Fall 2022 Community Conference

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.


A Thank You Letter to Jill Horan

Let’s all stop to take notice of one of the truly wonderful people around us: Jill Horan. The following reflection was written by incoming parent co-leaders, Heidi and Ildiko, as a celebration of the dedication, creativity, passion and kindness that Jill has brought to her careful tending of the ImproveCareNow Parent Working Group (which has announced a new name, by the way). 


The Spark That Set The Flame

I was a reluctant participant - I was perfectly content to let others lead the way. It wasn’t that I didn’t care, I just didn’t think I had anything of significant value that I could share. That’s not false modesty, I was literally fumbling through trying to understand what it meant to have two kids with a chronic disease that had no cure. That was until I began to partner with my local IBD care center and the larger ImproveCareNow community. 


IGNITE - Creating a Family

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 🔥 


Episode 14 of the imPACt podcast - IBD & Patient-Parent Relationships

Check out this episode of imPACt, where PAC and Parent Working Group members chat about how they've experienced the evolution of the patient-parent relationships and what this looks like in the context of IBD care.


IGNITE - Taking the journey together.

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 🔥 


What I Need, When It’s Needed – Communication and information seeking preferences of parents and patients are highly varied

As we have shared in previous #WINWIN posts, the ICN Engagement Team is committed to gathering and effectively sharing information, knowledge and know-how that may help patients with IBD and their families. In a 2019 survey the Engagement Team asked the ICN Community to share how they prefer to connect, find and receive information. Their responses are helping us learn how to get the right information to the right people at the right time on their IBD journey. In this post we are sharing feedback related to communication and information seeking preferences of patients and patients.

This is a work in progress. Our ultimate goal is to get the right information, to the right people, at the right times and using a method that works for them. We want patients and families to have what they need, when the need it! If you have thoughts to share on these topics, please contact us so we can learn from you!


Innovation Update – IV Sweatshirt prototype is comfortable and efficient

Ella and I want to thank you all for your incredible response to our first blog post where we introduced the IV Sweatshirt Project! If you haven’t read our story yet, we encourage you to start there – in it we share about Ella’s diagnosis with Crohn’s disease, our journey to find a treatment that worked for her, and how her experience ultimately led us to create something together to help kids like her stay warm and comfortable while getting infusions.

After a few trials and some delays due to COVID-19, we are excited to share that we have received a solid prototype of our IV sweatshirt design and have been able to test it at our infusion center!


Information about the novel coronavirus (COVID -19) for IBD patients and families

SARS-CoV-2

image credit: NIAID-RML

Many IBD patients and their families are concerned about the novel coronavirus (COVID-19) and the impact it may have on their lives, their care and their wellbeing. Please note: IBD patients and families seeking specific information about the novel coronavirus and their medical care are advised to communicate directly with their care team. While ImproveCareNow is not in the business of providing direct medical advice, we are in the business of connecting people, learning together and sharing information seamlessly. We'd like to share some information that may be useful to you:


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