LOOP Blog

We are hosting a Fall 2022 Virtual Community Conference as a way for us to connect, share information and updates, and learn from each other. This event is online, and is free & open to all who want to attend. We are keeping it brief (90 minutes), conveniently timed (6:30-8pm ET/3:30-5pm PT) and flexible - making it easy for you to drop in for some or all of the event. Our content is all intentionally focused toward patients and caregivers living with IBD. So, please join us (and invite someone you care for to join us) for #ICNVCC on November 9 from 6:30-8pm ET/3:30-5pm PT. 

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.

Thank you for following our story! Since our last blog, Ella (who is now 15!) and I (Emily) have completed our planned iVHOODIE donation to Yale Children’s Hospital through the generous ImproveCareNow Innovation Fund grant we received in 2019. When we set out to create a sweatshirt that was comfortable and provided IV access to both arms for people receiving infusions, during the height of a global pandemic, we could barely imagine producing a successful prototype let alone delivering 55 iVHOODIES - but here we are! With support from ICN and Yale we have accomplished our goal! We are forever grateful to ICN for helping us to achieve this and kickstart the future of iVHOODIES! 

“If you just sit and give folks a list of facts, they can debate those facts or try to refute them. They can't debate your story. Because it's your story." - Chris Keck on the imPACt Podcast 

Join Vanessa, Becky and Fionna for their conversation with Chris Keck from ImproveCareNow. We discuss storytelling - particularly personal narratives - and why stories matter.

We are excited to be hosting our Fall 2022 Community Conference in Dallas, TX later this month. This will be our first in-person event since moving to a Live Online format in Spring 2020 in response to the onset of the COVID-19 pandemic. September 21-23 we look forward to engaging with healthcare providers, patients and parents from across ImproveCareNow to all teach and all learn about recent results in our pediatric IBD research and improvement efforts. Download our draft agenda to preview the full conference schedule ⬇⬇

IBS (irritable bowel syndrome) and IBD (inflammatory bowel disease) are different disorders that intersect sometimes. Join Shira and I (Maddie) as we share our experiences and talk with Carlo Di Lorenzo, MD about IBS, IBD, and the complex and fascinating interactions between the brain and the gut.

Welcome to the second episode in a 3-podcast series we're doing in collaboration with the ICN SWAP group (SWAP stands for Social Workers & Psychologists). In this episode, you'll hear me (Ryleigh) and my fellow PAC member Avery talking with Lauren Potthoff, PhD - an IBD psychologist at Lurie Children's in Chicago - about mental health during IBD flares.

Join me (Autumn), Henry & Samantha for a conversation about medical trauma in IBD with ICN SWAP (Social Workers & Psychologists) group members Dr. Jennie David (licensed clinical pediatric IBD psychologist) and Dr. Alexandra Fuss. We are honored to have them join us to discuss this important topic.

Pediatric patients with IBD can have challenges with fatigue (feeling tired a lot of the time) and difficulties with sleep. While fatigue and sleep are known to be important factors in supporting optimal psychosocial and medical outcomes in pediatric IBD, it is unknown how these topics are talked about in IBD care with patients.

A new research project aims to learn more about Sleep & Fatigue in Pediatric IBD.

I was diagnosed with Crohn's disease at six years old, a year after I started experiencing symptoms. I have now been managing this chronic illness for 16 years! In addition to being diagnosed young, I was living in the Netherlands at the time -- while I wasn't born here, all of my family is from here and Dutch was my first language.