Connecting people is the main impetus behind our Q2 Care Package project. In a way, it is the motive that launched the Jack Pribaz Foundation in the first place.
When we started out in late 2011 there was no website or Facebook page or any community around KCNQ2-related epilepsy. Zero. Crickets. We were stranded on an emotional and clinical desert island.
Jack’s parents Mike and Liz hated being isolated in a vast sea of medical unknowns. But they knew, Jack’s doctors assured them, that there would be more kids like their boy. That there were more KCNQ2 kids out there. We just needed to find them. Our first website was a message in a bottle.
Sending a little love
Fast forward five years. Today we enjoy a thriving, welcoming community of KCNQ2 families who support each other and share war stories and triumphs. Most of these connections happen virtually, and so we wanted to offer a tangible welcome to new families who are just getting their bearings.
We turned to our heart-of-gold KCNQ2 supporters at our annual Jack’s Army golf outing last July and presented the idea for these Q2 Care Packages. Their generous response means we can send these little boxes of goodies around the world, and it means that each box is sent with the love.
“I love putting these Q2 Care Packages together,” Liz says. “I don’t get to travel as much as I’d like, so it is really fun to be contacted by people from all over the world. It makes me so happy to imagine these boxes finding their way to other families in faraway cities everywhere. And I do mean everywhere!”
At the time of this writing Liz had mailed 48 packages all over the United States and to Ireland, Germany, Netherlands, Belgium, Serbia, Croatia, and Spain, to name but a few. Just Friday she was at the post office with boxes heading for Florida, Canada, England, and Italy.
Best thing in the box
It’s not the adorable teddy bear, although the kids might disagree. It’s not the classic KCNQ2 t-shirt, either, or the nifty car magnets.
The best thing in the box is actually the information and instructions about enrolling in the RIKEE registry. Our scientific advisers have stressed that one of the most powerful things we can do as parents and as a foundation is to help grow the patient registry. Connecting with as many families as possible is not just compassionate; it’s also pragmatic. It’s the ticket to powering the research needed to run clinical trials and find a cure.
If you are reading this blog post you probably already have some knowledge of KCNQ2-related epilepsy, or love someone who suffers from a mutation in that gene. Stop to think about the families who are just now beginning that difficult diagnostic odyssey, or who have just received a diagnosis and don’t know what it means or where to turn.
Together we can find them. We can send them a little love. We can invite them to help our cause by enrolling in the RIKEE registry. We can let them know they are not alone.