Friday, March 17, 2017

8th Annual Unionville Run for our Sons 5K Run or 1-mile walk

8th Annual Unionville Run for our Sons
5K Run or 1-mile walk
Saturday April 22, 2017
Race time: 9:00AM
Charles F. Patton Middle School
Register or donate at:
To Benefit Parent Project Muscular Dystrophy
In Honor of Elliott and Henry Johnson
For those who don’t know me, I am Joanna Johnson, a Spanish teacher at Unionville High School.  My two sons, Elliott (13) and Henry (10), were diagnosed with Duchenne muscular dystrophy in 2007. Duchenne is a catastrophic muscle wasting disease that affects all the muscles of the body, including the heart and lungs.  Most boys with Duchenne lose the ability to walk by their teens.  This is followed by severe lung and heart complications.  Survival beyond age thirty is rare.  There is no cure.  Despite this catastrophic diagnosis, there is something that Duchenne can never take away from us and that is hope.  With the help of this amazing community hope is alive and well and we know a future without Duchenne is possible. We are proud to say that over the last seven years of Unionville Run for our Sons, we have raised over $360,000 for Parent Project Muscular Dystrophy to support Duchenne research.  This is no small accomplishment and we are so very grateful.  

For years, I have longed to share good news about the progress being made with Duchenne research and finally I can.  On September 19, 2016, the Federal Drug Administration approved the first drug ever to treat Duchenne muscular dystrophy, eteplirsen, now known as Exondys51.  This was a historic moment for the community and something we all worked hard for and wanted desperately.  This is something we can all celebrate because it is a concrete example of how a community coming together has the power to make a change.  Every dollar donated, every mile run, every person that became educated or educated someone else about this rare disease- MADE AN IMPACT AND MADE A DIFFERENCE!
Unfortunately, the drug will not be a viable option for Elliott and Henry based on their genetic mutation. But the hope is that the Exondys51 approval will move approvals for other Duchenne treatments in a positive direction.  In fact, Elliott and Henry have been involved in a clinical trial for a drug called Translarna to treat their particular genetic mutation.  It is currently in the review process with the FDA.   

We need to continue the momentum to ensure that treatments are made available to all those that have Duchenne.  Once that milestone is reached, we will continue our work until a cure is found and we can say we have ended Duchenne once and for all.

We hope that you will join us in our fight on April 22nd.  Come to run or walk or bring the kids to enjoy the various activities available.  My family and I and all those affected by Duchenne thank you for your support.

Warm regards,
Joanna Johnson