LOOP Blog

Adalimumab (ADA) is an important biologic drug used in the treatment of pediatric Crohn’s disease. In May at Digestive Disease Week 2016, a meeting of gastroenterologists from around the world, Dr. Keith Benkov presented research examining variation in the use of Adalimumab monotherapy and concomitant therapy with an immunomodulator in pediatric Crohn’s disease. The cross-sectional analysis was completed using data from the ImproveCareNow Registry (known as “ICN2”).

Click the poster image for a larger view

PAC co-chairs, Bianca and Alex, are on the blog today to recap some of the amazing things this group of patient advocates has accomplished this summer. The PAC was created in 2011 with the intent to bring IBD patient advocates together to change IBD care for and with the ImproveCareNow Network. Over the years the PAC has evolved and grown and we've highlighted this in our new timeline. This summer the PAC made strides towards becoming a bigger, more engaged and effective council and we're excited to share how we're doing it and what it means for the future.

Most people have a connection with music. Music can calm us:  think about the lullabies we sing to our children. It can excite us: think of the huge crowds that jump and cheer at concerts. And most certainly music can cause us to be nostalgic: think about how often we hear a song and think, "wow that brings back memories!" For those who play and create music it can be an emotional outlet. Music connects.

Music has always been an integral part of our family. Olivia plays the flute, sings and tap dances. Dominic plays the bass guitar and sings. And Jerome has made a living at being a musician, both as director of Liturgical music at Saint Michael's College and with various Jazz ensembles in the Burlington, Vermont area.  My name is Claire and even though I don't play a musical instrument, I've dabbled in singing in our church choir and love to listen to live music, especially if the musicians are my husband or kids!  

To many, a connection between Crohn’s disease (IBD), ImproveCareNow and music may seem unusual. To us it’s natural. We would like to share with you the story of how IBD has impacted our family and how it lead us to become passionately involved with ImproveCareNow. And, of course, how music is an integral part of our journey.

A new video featuring Peter Margolis, MD, PhD highlights how ImproveCareNow's partnership with PCORnet is enabling the network to design and deliver better care for and with patients with Crohn’s disease and ulcerative colitis, and how it is accelerating the pace of research that will answer important questions about these diseases.

It’s a scene out of a typical relaxing Sunday afternoon: you’re sitting on the couch, watching your favorite TV program. There’s some occasional napping thrown in there, and it’s like you don’t have a care in the world. After the stress and busyness of school or work it makes for a restful and relaxing afternoon. To an outside observer, life during an IBD flare might look like exactly that.

The events of the last few weeks have had me reflecting on some things. And while I in no way have the writing skills of the great Sami and Jennie, I thought I would do my best to capture what I have been thinking about.

But a little bit of background for you all. I have been interning with ImproveCareNow through Cincinnati Children’s this summer and I also just experienced my first hospitalization in over 3 years. Throughout my internship, I was focusing on the motivation that drives people to be involved with a patient-focused group like ImproveCareNow.

About a year ago, I was tasked with leading a small project: to redesign ImproveCareNow’s website. We wanted to redesign the website by enhancing the look and feel, while making it easier to connect our ImproveCareNow community members with resources and information to improve care for kids with IBD. 

As a patient with a chronic illness, I have become well-versed at shedding my humanity and emotions and leaving them outside the clinic room, like taking off my shoes when coming home. We are made to believe, through experience and myth, that doctors are only interested in data. I am so practiced in this belief – or perhaps in that fear – that I can recite my diagnostic and treatment history in full, like rattling off a monologue with the medicalized Latin words becoming normalized. 

Whether it’s a concert solo, home run, parade, or when a family member gets out of the hospital after a long stay, there’s no feeling like when the crowd goes wild with support and encouragement. In these moments, the town you live in begins to feel like a community.