The Story of Empowered by Kids

Justin Vandergrift is a co-founder of Empowered by KidsJustin Vandergrift believes when you’re meant to do something, doors will open. But you have to be there when the doorbell rings. You have to open that door. And Justin has opened a lot of doors in his life. He runs multiple companies, volunteers at Levine Children’s Hospital, and has made it his mission to deliver hope and inspiration, information and empowerment to families (just like his) living with a chronic illness – like Crohn’s disease, which his daughter Kathryn has.

Crohn’s disease, along with ulcerative colitis, is also known as Inflammatory Bowel Disease or IBD.

I asked Justin to share the story of Empowered by Kids (EBK), the non-profit he co-founded with two other parents (Tania Moon and Julia Ament-Cox), to fast-track the delivery of hope, inspiration, information and empowerment where it’s needed most.

The story begins with an ImproveCareNow (ICN) Learning Session and a greeting card.

At his first Learning Session, Justin remembers Mary Jones from Texas Children’s sharing how she designed a card and filled it with greetings from patients and hand-delivered it to kids with IBD staying on the inpatient floor. It was a huge success.

Justin loved the idea, so he partnered with an aspiring artist and pediatric IBD patient back at Levine to design a card and then filled it with greetings from patients. He printed the cards and added them to the inpatient care kits the Levine support group put together. The response was amazing!

“I remember our Social Worker telling me the cards were the very best part of the care kits!”

Building on the success of the greeting cards, Justin and the ICN Parent Working Group hatched a plan for a “Book of Hope” – a collection of stories and greetings from parents and patients with IBD, designed to deliver hope well beyond the walls of a single hospital. Enthusiasm for the project was overwhelming! But it was not clear how to pay for it and what the legal implications might be. Sensing the door closing, Justin turned toward the next.

For his birthday, he wished for nothing more than the support of family and friends, and was overwhelmed by their generosity. Recognizing this as the opportunity to bring Book of Hope to life, he teamed up with Tania Moon and Julia Ament-Cox, whom he had been working closely with on the project, and EBK was born.

EBK logo

In six short weeks, the trio established EBK as a 501c3 non-profit, launched a website, laid out stories from 25 parents and patients with IBD in the first edition of the Book of Hope, and printed 10,000 copies.

They arrived at the Fall 2013 Learning Session with hope in hand, and blew everyone away as they unveiled the Book of Hope and invited ICN care centers to order as many copies as they needed (free of charge) to give to all patients and families with IBD across the network. Today, Justin estimates over 60% of ICN centers have the Book of Hope in stock. And it is always available for free download online here.

The Book of Hope, like everything EBK creates and shares, is designed for parents and patients, by parents and patients. Everyone at EBK has lived through chronic illness diagnosis, and is still on the journey. Their goal is to make it just a little bit easier for those that come after them by sharing tools and information that empower patients and parents to ask good questions and make good decisions; by providing hope and inspiration as a constant reminder that no one is in this alone; and by bringing together a community of people who will continue to support, inspire, educate and empower one another.

Ding Dong…Ding Dong…

Do you hear that? It’s a doorbell ringing. Go ahead open the door. Connect with EBK. They’ve been waiting for you! Here are a few ways to connect:

M Troy Tweet EBK

In case you’re wondering, Justin still listens for the doorbell. Here’s a sneak peek at some of the EBK doors that will be opening soon.

  • Hope on Demand, an iOS app delivering hope to your apple device
  • Hypoplastic Left Heart Syndrome Book of Hope - Winter 2014
  • EBK IBD Podcasts, combining ICN center highlights, opportunities and best practices

Gutsy 3 & 4 Take On The Learning Session!

As this year’s PAC Scholars Bianca and I (Isabelle) got to go to the 2014 Fall Learning Session in Chicago. We had such a great time and just wanted to share some of our thoughts about the LS before, during and afterwards!The 2014-15 PAC Scholars Bianca & Isabelle

Before:

Isabelle: Leading up to the Learning session I was so excited! There were so many texts and e-mails and many plans to be made (plane tickets, hotel rooms, and most importantly snack choices). As it got closer I was a little nervous, as I am the only one of the PAC representatives who had never been to a Learning Session before, but mostly I was just so excited to see/meet my fellow PAC leaders and so many others!

Bianca: Before the Learning Session I was super excited to see everyone again and be able to meet my fellow PAC Scholar, Isabelle! Since I had already been to a few Learning Sessions, I knew what to expect (how busy it is, the amount of new people I would be meeting,etc.), but I was looking forward to working on a different level with the PAC. Before the Learning Session, I got to help out with the pre-work. “Grading” each center’s vision for their ideal treatment center and picking my favorites was a lot of fun. I loved reading how big every center’s dreams were for their own perfect IBD center.

During:

Isabelle: I met so many interesting people. It was so amazing how nice and down-to-earth everyone was, including the big-shot doctors. They all introduced themselves by their first names and seemed genuinely interested in hearing about where I go to school, what I am studying and my dreams for my future and the future of the PAC. There were many planning sessions with just the PAC and it really got me excited about our future projects and being in the Learning Session environment helped make those projects feel connected to a larger purpose.

Bianca: During the Learning Session, I met so many more people than I had anticipated! It was great to be able to formally meet everyone and see how passionate each and every center is. I also got to spend a lot of time with Isabelle, Jennie, and Sami, which was awesome to get to know them on a different level, rather than throught text/emails. The past few Learning Sessions I had been to were nice and helpful, but I like to be more involved, so this Learning Session was by far the best!

After:

Isabelle: I made so many connections and learned a lot about ICN at the Learning Session. It was a lot to take in but I really enjoyed the entire event and can’t wait to go back again, this time with even more knowledge heading into it. Meeting my fellow PAC leaders Jennie and Bianca and of course seeing Sami again was so much fun and I feel like I am so close with all of them already. I am very excited for our future and the future of ICN!

Bianca: Afterwards, I was beyond excited for what this year would bring. This LS was great becuase, like I said, I got to spend a lot of time with the PAC leadership, being introduced into the PAC leadership position, setting goals, ordering room service, and just hanging out with each other.  Though the few days were fun and enjoyable, things did get hectic at times, but overall a great, well spent, work filled weekend. I cannot wait until the next LS, because the experience of each Learning Session is like no other – the connections made, the work being done, and of course the laughs and tears shared. I am beyond excited for this year!

I wish I knew _______ about IBD.

Speak out. Tell ImproveCareNow what IBD questions need to be answered.

What do you wish you knew about Crohn’s disease or ulcerative colitis? Do you have questions about diagnosis or treatment options? What about daily management of IBD? Maybe you’ve wondered if a certain drug or lifestyle change would help. These are important questions! The answers could have an incredible impact on your life, the life of your child, the lives of many patients living with IBD.

ImproveCareNow is ready to answer your important questions – but we need you to tell us what they are!

Patient Priorities IBD Learning Priorities ProjectTeens and young adults with IBD, and their parents and clinicians are invited to participate in the IBD Learning Priorities Project - a study being conducted in partnership with Patient Priorities. Participants will be asked to share questions and concerns about IBD, and it’s treatment, management, etc. in a confidential survey. The results will be used to create a list of the top learning objectives for ImproveCareNow to focus on.

Speak out! Tell us what you need to know. Go to patientpriorities.com to complete your brief survey, now.