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! 

So far, in 2020, 50 stories have been shared #InTheLOOP. Thirty-four community members have written about IBD from their perspectives as patients, parents, researchers, clinicians, improvers and friends. They have covered topics ranging from COVID-19 and telehealth, to IBD research and innovation projects, to their struggles, triumphs and hopes for the future. 

LOOP continues to make an impact in the IBD community, as a place where people can share their experiences and perspectives, to help others understand the realities of life with Crohn's disease and ulcerative colitis more clearly, and to keep us all #TalkingAboutIBD. Without further ado, here are the stories you read the most in 2020!

LOOP is a place for ICN Community members to share their stories – experiences, perspectives, wisdom. Since the blog was created in 2012, hundreds of stories have been shared by patients, parents, clinicians, researchers, collaborators and friends. We've recapped our top five, most read stories from patients about life with Crohn’s disease.

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!

At April’s Live Online Community Conference (LOCC), Dayton Children’s introduced the Should I have IBD surgery? shared decision-making webtool and Dear Ostomy video. These resources are key components of an IBD Surgery Shared Decision-Making Toolkit that the Dayton team created using an ImproveCareNow (ICN) Innovation Fund award, made possible with support from the Clare Foundation. The toolkit generated a lot of excitement and questions, so project leaders, Dr. Kelly Sandberg and parent Shellie Doub took some time to answer to the most frequently asked questions.

Hi, my name is Ella and I am 12 years old. I am currently a 7th grader who likes spending time outdoors and hanging out with my friends and family.

When I was nine years old, I started feeling sick. I was nauseous all the time, had trouble eating without pain and was so tired I could barely get through the school day. By the time summer arrived, I couldn’t even walk an entire block without feeling ill. We didn’t know how serious it was until I was diagnosed with Crohn's disease at age 10. By then, I had stopped growing and was severely underweight. It was very difficult for me, especially in the beginning. The first rounds of medication were not successful; I couldn’t tolerate them. In August of 2017, I began receiving IV infusions (Remicade) at Yale New Haven Children’s Hospital. I am now in remission and feel great but going for IV infusions as often as every four weeks, as well as taking oral medications, is my new “normal” and the inspiration for an innovative project I’m working on.

We believe that many of the most innovative and potentially high-impact ideas for improving pediatric IBD care are likely to come from those living with the condition daily. Because of this, ImproveCareNow has continued to support innovative project ideas through the ImproveCareNow Patient and Parent Innovation Fund. The awardees for year three of this program have now been announced!

We know that many of the most innovative and high impact ideas for improving pediatric IBD care are likely to come from those living with the condition on a daily basis—ImproveCareNow (ICN) parent and patient partners. Previously, there was not a formal mechanism to encourage and provide support for projects proposed by these partners. While many successful projects have been carried out by dedicated parent and patient members of the ICN community, many more are not able to be advanced without funding and assistance.

In 2017, we decided to address these needs and advance projects that will make a difference in the lives of our community members. With support from the David R. Clare and Margaret C. Clare Foundation, we launched the ImproveCareNow Patient and Parent Innovation Fund. In the first two years, the Innovation Fund has supported three projects, and we are excited to announce that funding will continue with Round Three of the ImproveCareNow Patient and Parent Innovation Fund in 2019. 

My name is Mary and I’m head of the Stanford Children’s Hospital Parent Working Group. In 2017 my team and I received an ImproveCareNow Patient and Parent Innovation Fund award to host a fun and interactive cooking class to teach members of our center how to cook healthy meals for people with IBD. Through this project, we hoped to build self-management skills and help strengthen our center’s sense of community.

The MassGeneral Hospital for Children (MGHfC) Parent/Patient Advisory Team (PPAT) was honored to be selected for an ImproveCareNow (ICN) Patient and Parent Innovation Fund award in the fall of 2017. As a team of parents, patients and healthcare providers, this award enabled us to work together to provide valuable educational programs aimed at increasing and family knowledge of IBD, and much-needed opportunities for patients and families to network with others to share information, knowledge and know-how.

As a team, we have chronicled our collaborative, year-long journey of working together to increase the number of participants enrolled in our PPAT engagement group and formalize a model that others across the ICN Network can steal shamelessly. Our project has culminated in a “How to Manual”, which we are excited to continue sharing across the ICN Network at our upcoming Virtual Community Conference. This manual shares our lessons learned, challenges, tips, and strategies to achieve success in growing a local engagement program that will connect, support, and engage IBD patients and their families. Our hope is that the manual will serve as a catalyst to help other centers achieve similar partnerships, which will result in improved IBD care and outcomes.