Cure JM Foundation 2017 National Conference and Fundraiser

First-Time Dad and Daughter Attendees

Written by Chris Bokis

Chris and MikaylaThe Cure JM conference was a blast. Mikayla got to meet new friends, we learned more than we ever wanted to know about JDM, and can relate to all the powerful stories everyone had to say about their experiences with JDM.  I attended a session for Dads of kids and teens with JM, and we both learned so much from the dozens of physicians and researchers in attendance.

Mikayla attended sessions just for teens, met other teens, and learned from physicians how to begin to transition into taking care of own medical needs as a teen.

And most of all we were inspired to make a difference. Our lives and Mikayla’s future have been changed by the families before us who stepped forward to make a difference, and now it is our turn to do the same. In our first year of fundraising for Walk Strong to Cure JM™ we came in 3rd place for fundraising. That is amazing! We want to thank all of our friends and family who gave generously toward our Cure JM Fundraiser. Next year we will do even better.

Also, the most amazing part of the trip, watching Mikayla will herself alongside her new friends and walk 1 mile on her own. I had her wheelchair there, but she refused to use it for the walk.  She is amazing!

One thing we also learned, we have a very long road ahead of us. We are encouraged by the other families standing beside us as our fight to beat this life-changing disease has just begun.

I truly appreciate the other Cure JM parents who encouraged us to attend - it was worth it. We are already looking forward to the next event and bringing the whole family.