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Category: Uncategorized

19
Sep 16

BREAKING NEWS: FDA approves first ever drug to treat Duchenne muscular dystrophy

Moments ago, history happened! Eteplirsen, the personalized genetic treatment we’ve been advocating the FDA to approve for the last several years, will now be made available to all patients who can benefit from this groundbreaking therapy.  Read the full press release from the FDA here.

A lot of blood, sweat and tears got us to this place.  Twelve boys gave up a huge slice of their childhood to participate in this clinical trial.  They are our true heroes.

We want to thank you–our committed and unstoppable supporters–for every donation, hug, word of encouragement, social media share, sponsorship, volunteer hour, petition signing, call to legislators–the list goes on and on.  No one person could have achieved this victory alone. We are a powerful force to be reckoned with.  This victory is symbolic of what can happen when many people band together and say, “ENOUGH!  You will NOT take my son’s life without a fight.”

The biggest thank you goes to my son, Jackson.  When we received word of his diagnosis 4 years ago, I thought happiness was a bygone.  A reality no longer reserved for families like us. Along the way, I’ve learned to follow his lead, and he never disappoints.  Even though his body continues to fail him faster each day, his smile continues to light up the darkness.  Jackson–I could not love you more, my brave, strong warrior.

Today we celebrate.  Tomorrow, we get back to work….

All my gratitude,

Kelly Maynard

15
Nov 14

Thank you PPMD for including our story to the FDA

Parent Project Muscular Dystrophy compiled compelling stories from the Duchenne community and submitted them to the FDA in a paper titled “Patients are Waiting.”  Jackson’s story is included on Pages 14-15.  Thanks PPMD for all you do!  Read the paper here.

15
Nov 14

Little Hercules Foundation provides funding for gene therapy

The Little Hercules Foundation, a member of the Duchenne Alliance, is proud to have funded Follistatin, a gene therapy that will potentially help ALL boys with Duchenne.  Read the press release here.

02
Aug 14

DuchenneDash 2014

Thanks to the 202 runners/walkers who signed up for DuchenneDash 2014 5K Run/Walk at Highbanks Metro Park on July 19, 2014. Even with the downpour of rain, we had many supporters show up to support us in our efforts to provide financial support to those with Duchenne who need service dogs.  And, we were delighted to have OSU Buckeyes Tight End/Fullback Coach Tim Hinton and 11 Buckeye football players show up and volunteer to work the water stop, sign autographs and take pictures.  Jeff Heuerman, TE for the Buckeyes, mentions the experience in an interview for Scout.com here.  Our four-legged supporters showed up dressed to the nines in the hopes of winning several prizes for best-dressed pooch. Check out the pictures here!  Make sure you join us next year for this unforgettable event!

20
Jul 14

DuchenneDash 5K Results

Thank you to everyone who came out to Highbanks Metro Park and braved the rain to run in DuchenneDash 2014!  Results can be found here:  http://greenswell.com/events/results.

 

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