ImproveCareNow Pwg


I'm the parent partner

My name is Kathy Rygg, and I’m the parent partner at Children’s Hospital & Medical Center in Omaha in Nebraska. My son, who is now 11, started having symptoms at two but wasn’t diagnosed with ulcerative colitis until age five. 


Collaboration. Connections. Community.

These three words (collaboration, connections, community) come to my mind when I think of ImproveCareNow (ICN). And they represent three reasons I love leading our Family Advisory Council and sharing ICN with the families of Dayton Children’s. These are my people. They understand my life. They, too, know what it’s like to parent a child with IBD.

It is for all of these reasons that I am thrilled to host Virtual Community Conference (VCC) Watch Parties – so we can collaborate, connect and feel like we’re part of a community.


Honored to Serve

My name is Missy and I am a new member of the ImproveCareNow Board of Directors. When my son was diagnosed with Crohn’s disease in the fall of 2016, one of the handouts I received from our care team at Nemours Jacksonville was a flyer about ImproveCareNow (ICN). That night I signed up for the Parent Working Group and the ICN newsletter.


Hi, I'm Pam

I’m Pam, and I’m a member of the ICN Parent Working Group (PWG). My husband Kraig and I have three teenagers, and I became involved in ICN soon after our oldest son was diagnosed with Crohn’s disease. He first started having symptoms in the fall of 2015 and was diagnosed in March 2016.


Finding Hope

My name is Maria and I live in Orlando, FL. In 2004, our family received the devastating news that our oldest daughter had Type 1 Juvenile Diabetes. I would have never imagined that a few years later in 2013, we would find ourselves confronted with yet another life altering diagnosis. 


A Journey to Sustain Remission

My son was diagnosed with ulcerative colitis in 2014, at the age of 13. Fast forward to 2018, and I am thrilled that he is in remission and a thriving 11th grader juggling AP classes, SATs, extra-curricular activities, college tours, and yes, medication adherence. However, I’m also here to tell you, it has been a journey to achieve and sustain remission. Like so many of you, my mind raced with a litany of questions for days, weeks, and months after his diagnosis…IBD? Ulcerative colitis? What? No cure? How did my son get this? Next, guilt set in and then more questions…Why had I not heard about IBD before his diagnosis? Is this genetic? Was it the foods I prepared? Could I have prevented it? I was so distraught. I could not fix this, not this time.


Parent and Caregiver Self-Care Tips

Deb_K_-_Self-Care_Tips_3.png

I am a parent of three children, and all three have Crohn’s disease. My oldest was diagnosed in 2010 and my younger two were both diagnosed at the same time, in 2013. As a parent of one child, let alone three children with IBD, I found life overwhelming, stressful, and mentally and physically draining. Personally, I have found self-care to be a critical piece in coping with the initial diagnosis and the on-going treatment and care of my children. I will be the first to admit I struggle with self-care at times, but at least I have a list:


As the holidays come and go

JV_As_holidays_come_and_go_3.png

Holidays are a special time for all. The hustle-and-bustle is paid back in spades as you watch a child’s joy when they unwrap a special gift or when you spend time with extended family. A few years ago, I was given a very special gift at Christmas – one which I will never forget.


NO Public Restroom – A Parent Advocacy Story

Deb_O_3.png

A few years ago, I was in a retail chain store and the person in front of me at the cashier asked to use the bathroom. The cashier said, "We do not have a bathroom." So, when it was my turn to cash out I said, “You have a bathroom...you just don't let the public use it?" She answered me, “Yes.” I thought to myself that this would be a great teaching moment.


Putting Data to Work to Answer Questions: Evaluation of Adalimumab Effectiveness in Anti-Tumor Necrosis Factor-Naïve Pediatric Patients with Crohn’s Disease in Clinical Practice

Adalimumab_Effectiveness_Study_-_CD_3.png

The ImproveCareNow Registry is a treasure trove of information about patients living with IBD. But, data, like Amazon gift cards, are worthless unless used. And it takes some intrepid, or at least good-with-numbers, Indiana Jones-type researchers to plunge into the depths of the jumble of figures – to put the data to work to answer questions.


1  2  3  Next →

Built by Veracity Media on NationBuilder