ImproveCareNow Pac


I became my own worst enemy

My name is McKenna, I’m 18 years old and just graduated high school! I was diagnosed the fall of my sophomore year with Crohn’s disease. That year I quit playing soccer and joined the boys varsity football team for junior and senior year!  

My biggest struggle with Crohn’s was myself…I became my own worst enemy.


Being involved is empowering!

When I joined ImproveCareNow about 1.5 years ago, research was one of the primary ways I wanted to be involved. I’ve lived with Crohn’s disease for almost 11 years, and for much of that time research felt like something that happened behind the scenes and was entirely out of my realm of influence. Often research is done to or about patients and families, but very rarely is it done with them. Engaging patients and families in research can not only enhance the research itself, but it can also help patients and families feel as though they have a stake in the discovery of new knowledge about IBD.


Finding my place as a patient within ICN

I have been part of the PAC since August 2016. Getting started, I never knew that joining the PAC would be so life-changing for me. I never dreamed of being a part of something as innovative as I believe ImproveCareNow is. From my perspective, no other healthcare network has accomplished so much as ImproveCareNow. As a patient, it allows me to boast on those accomplishments, and it motivates me to work harder in doing my part to grow the network. Wait, but what is my role? The patient’s role?


PAC Social Media Week Recap - CC18S

Recently, we completed Social Media Week leading up to the Spring 2018 ImproveCareNow Community Conference. PAC Social Media Week is a time before a Community Conference, when we like to engage ICN members and the IBD Community and generate enthusiasm by sharing a personal and highly-focused series of quotes, pictures and stories. In the past, we’ve addressed questions like "What is your IBD story?" "What or who motivates you to keep on fighting?" and "How do you/or the PAC raise awareness for IBD?" This year we focused on the core values of ImproveCareNow. With the help of PAC members, we were able to compose a post for each day, sharing a core value and what it means to them.

Here are some #ICNCC18S PAC Social Media Week highlights:


College and IBD Handbook

The past few months, I’ve been working with my ICN center to create a series of ‘College with IBD’ handbooks. These handbooks are meant to help guide patients who are beginning the transition to college, or to provide additional support those already in school. I wanted to take the difficulties I experienced (and subsequent knowledge I gained) and create a resource that would support others in areas where I wish I’d had more guidance.


Learning to be comfortable with Crohn's

Hi, I’m Linden. I’m 14, love Broadway music and being part of the show choir at my high school, and I have Crohn’s disease.


A Guide to Gutsy Living

One of the greatest gifts I have ever received is a small pin that’s likely worth about $5. I imagine that most people who look at the pin, proudly affixed to the collar of the lab coat I wear during clinical placements, assume it’s a red flower. But it’s not a pin of a red flower. It’s a pin of a stoma.


Slow Down & Smell the Roses

When parents watch their first child head off to their first job - out of state - understandably there will be hugs, tears, and teachable moments. The night before I left home and traveled 477 miles away to start a job in Atlanta was Christmas. As my girlfriend, Emma, and I were saying goodbye to each other - there were definitely tears. And it was during this emotional moment that my Dad came over and wrapped both of us up in a hug and said, “it’s not going to be easy, but it’ll be okay.” Just another of life’s hard moments, made a little better with the sharing of a little parental wisdom.


Tools for Life With IBD - Updates

In ImproveCareNow we believe in "sharing seamlessly and stealing shamelessly," which essentially means if someone has an idea and develops something useful, it is shared widely so others across the network can benefit from their work. Our culture of generosity and sharing allows us to spread new ideas and innovations quickly, so they can impact many more lives.

We maintain a selection of tools & resources on our website, which can be accessed at any time. Here are a few highlights and recent updates.


A blessing in disguise

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Hi there! My name is Bianca. I’m and 18-year-old college student who loves Broadway and being a patient advocate with the PAC, my Crohn's & Colitis Foundation chapter, and the National Council of Crohn’s and Colitis Leaders. I was diagnosed at 15 with ulcerative colitis and since then have absolutely fallen in love with spreading awareness about Crohn’s disease and ulcerative colitis and fostering compassion around these chronic illnesses.


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