ImproveCareNow Justin_vandergrift
As the holidays come and go
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.
To Scarlet
This summer marks the six-year anniversary of the beginning of my role as a caregiver for a child with a chronic illness. At times, my daughter’s diagnosis seems so close – and yet so far away. In those six years, she has blossomed from a child into a beautiful young woman. Today she can speak with authority about her care, her medications and her routines. Six years ago, she couldn’t pronounce her medications - let alone tell you the dosing.
Parent Working Group Year in Review
As 2015 ends I can say the year was nothing short of remarkable. The Parent Working Group (PWG) grew, accomplished and got stronger. The fall Community Conference was a high point for parent participation. My first conference was in October 2012 where 18 parents attended. This year our numbers swelled to nearly 50. Participation on our monthly calls has increased 50% in six months. This growth speaks directly to the partnership between the ImproveCareNow Network and parents.
The Story of Empowered by Kids
Justin 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.
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:
- IBD Book of Hope, created by ICN Parent Working Group
- Cystic Fibrosis Book of Hope, created in partnership with Erin Moore
- EBK IBD eNewsletter, written for parents, by parents
- Honored Patient Stories, shared across EBK's social media channels
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