MarbleRoad, a non-profit based in DC  wanted to make a creative impact to raising awareness to families in need

Their mission: ….” to connect people who have complex illnesses with the resources they need to help them improve their lives.”  And with the help of R.A.R.E. Project and others, MarbleRoad accomplished their task with their StoryBook initiative.

We all know children love to read.  In the old days, we used to call avid readers book worms.  The little ones who are unable to read, love to be read to by their grandparents, parents, siblings or anyone who will put them on their lap and share a story or two.   When a child is sick, reading a story not only helps to make the time pass by, but it can take their mind off their illness.  Fortunately, there is an abundance of stories to read.

But, what about books that speak to having disparities amongst the population at large?  What about books that talk about disabilities, hospital stays, and long-term physical ailments?  That’s what MarbleRoad realized;

there weren’t enough children’s storybooks that focused on characters with illness or disability in a meaningful way, and with person-first language.”   

So during the time Genzyme, a leading biotechnology company founded in 1981, announced their Patient Advocacy Leadership (PAL) Awards, it seemed to MarbleRoad the perfect opportunity to pull The Rare Children’s Storybook Project together.  As such, an amazing team comprised of foundation executives, doctors, literacy experts and patient advocates came forward and signed up to be a part of the Advisory Committee to review the storybooks for the project.

Howard Liebers, Founder and CEO states, “The first year with a new program can always be a little scary — you never know how much interest and engagement you might get from the community you are trying to serve. The Rare Children’s Storybook Project has been a huge success though; a dozen families wrote storybooks, ten of those families created videos that have collected more than 17,000 views on YouTube, and several families have received financial assistance for health care related costs. MarbleRoad would like to continue the Project, and hopefully bring a few of the storybooks to publication.”

RAREproject’s Founder and CEO, Nicole Boice had the opportunity to participate as a judge for this initiative and stated, “It was amazing to see the variety of books that came in but also the enthusiasm and incredible quality that went in to each book.  The judging aspect was difficult due to the outstanding submissions – but I was super grateful to be involved in the process and bring these great stories to life.”

MarbleRoad’s idea resulted in twelve amazing storybooks, and ten YouTube videos (which collectively have received more than 17,000 views on YouTube).  On March 13, MarbleRoad cut checks for thousands of dollars in financial assistance, sending them to families who demonstrated need related to associated health care costs.  Some of the expressed needs included; support for everything from transplant costs, to accessibility modifications in the home, to other treatment costs.

AND THE WINNER IS….

BEST STORY

When the Lights Go Out – The Pletcher Family

***Their video “RDH12 Fund for Sight and Finley’s Fighters” has nearly 1,400 views on YouTube!

RUNNERS UP

Angel Baby Forever – The Benson Family

Sam & The Lost Wooby – The Greathouse Family

MOST VIRAL VIDEO

https://youtu.be/OTaNIWEUw04

***The video has nearly 12,000 views on YouTube!
For You, We Prayed  – Family Website
X