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POV: You can love data and still fail data entry

This spring, Teresa (a self-proclaimed dataphile) led a breakout session at our Live Online Community Conference where she and Dr. Howard Baron (ICN physician leader) talked openly about data entry failure at their center with the hope that others could learn from their experience.



Finding my way to mindfulness meditation practices that resonated

Diagnosed at age 15 with severe IBD, my daughter’s journey with illness was bumpy, but manageable, until the summer after her sophomore year of college. Her colonic health had been on a slow decline for some months, and that’s when cDiff took advantage. Though her health worsened over the summer, she was able to convince her doctor to let her go back to college in the fall. There, cDiff continued to recur and stopped responding to all medications. An oral fecal microbiota transplant finally shut down the cDiff but sent her into her worst flare ever. She was hospitalized on the opposite coast from where we live. I flew out to be with her, thinking it would be for a few days and ended up staying a couple of months until she was stable enough to get her home to California, where she was admitted to a hospital there. Of all the challenges we’ve faced over the course of her illness (she’s now 27), the time we spent on the East Coast, far from all our supports was the most difficult. She was on an adult ward there, and they didn’t seem to understand why I insisted on staying with her.

It was the first time my stoic child became depressed. And I found myself overwhelmed, afraid, and alone.


Professor NiMBAL is helping IBD patients and their families get better care

David Suskind, MD is an IBD clinician and researcher, as well as physician leader of ImproveCareNow at Seattle Children's Hospital. At our Fall 2022 Community Conference, Dr. Suskind shared the Professor NiMBAL comic, which presents important information about Crohn's disease and ulcerative colitis in a way that is easy to digest and feels less scary. Read more about how the comic came to be as Dr. Suskind answers our Challenge, Choice, Outcome interview questions.


iVHOODIES - An Update on The IV Sweatshirt

The iVHOODIE provides IV access in either arm for children and adults.

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! 


Fall 2022 ImproveCareNow Community Conference - Re-Emerging Stronger Than Ever

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 ⬇⬇


The story of "Up and Adam" - my picture book for kids with IBD

Hi, my name is Adam, and I am a 24-year-old medical student. I was diagnosed with ulcerative colitis when I was two years old and had my colon removed when I was 12. Recently, I published a children's picture book, Up and Adam, about my childhood experiences facing IBD with a positive attitude. This is the story of how and why I created Up and Adam and how I hope my book can help young kids by offering a tangible connection to someone who knows what they're going through and can remind them they are not alone. 


Episode 24 of the imPACt podcast - Drs. Sunseri & Crawford talk Exclusive Enteral Nutrition with the PAC

Hello everyone - it's Fionna from the Patient Advisory Council communications team. I'm excited to share that after a bit of a break the PAC is back with an exciting new episode of our imPACt podcast where we chat about a commonly used, but often not discussed, IBD nutritional therapy.


Top 4 Things to Know When You're Diagnosed with IBD

When I was diagnosed with ulcerative colitis at 14 years old, I was shocked. I was lucky enough to already have some familiarity with the disease, but I never thought it would happen to me. I had every single textbook symptom, but I still felt so numb and so distant from the new reality I had to face. This isn’t an uncommon feeling, and it can be really hard to know where to start. IBD is a complex disease, so here are some things I found helpful while learning to navigate those first few months after my diagnosis.


Sharing the story of how patient and family engagement can impact IBD care - a clinician perspective

In December 2021, our team's ICN Coordinator/Data Analyst - Ashley Kiel - shared her experience as an essential, but non-clinical team member involved in the challenge we undertook to educate our local IBD community about the ImproveCareNow CIRCLE and how patient and family engagement can positively impact overall care and treatment of IBD. Now, I'd like to add my perspective, as a pediatric GI doc, on why engaging with patients and families is so important, how we have been pursuing engagement efforts over the past year, and what others can steal shamelessly from our experience.


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