51 won’t help my child, so why should I send a letter to the FDA now? Simply because TOGETHER WE ARE STRONGER……

Posted by: Jen Dumm on December 06, 2012


A few weeks back Christine McSherry put the call out to the Duchenne Alliance to urge the FDA to speed the process of approving eteplirsen. Even if your child will not directly benefit from 51, this action is the first and most critical action ALL duchenne parents must take. Moving 51 through the FDA WILL move the next one, the next, the next one, the next one and on and on and on much faster. As you know, a FAST FDA is what all of us desire for our boys.

Your action is CRITICAL and you need to act now to share your voice with the FDA to show them that Together this community is Strong and we will NOT stop until every last child has the medicine they need that will give them breath to speak, a heart to love, voice to laugh for so much longer than the statistics tell us they will have.

This Christmas, open your heart and your generous spirit – start the movement in your own town. This is what Christine started for us in North Royalton, OH:




        • Anastasia Hardoby took the FDA letter to her high school = 360 letters signed

        • The Strongsville Rotary Club distributed the FDA letter to their weekly meeting = 110 letters signed

        • Rob Bammerlin went door to door in his neighborhood = 35 letters signed

        • Grace Flower cased her neighborhood and included the letter and self addressed envelope in her Christmas cards = 300 letters signed

        • Mary Londahl went through her apartment building and urged “Clipped Wing’s a non profit of United Airlines Flight Attendants to sign = 200 letters signed

        • My mom took the letters to her swimming class = 20 letters signed





Countless other examples of our community standing strong for one little boy they know… imagine what your community can do for your son! Don’t think we are done….. we have many more avenues to alert the FDA about eteplirsen and the greatest need our duchenne community has!

This is our time – this is our voice – act now and let the FDA hear YOU LOUD AND CLEAR FOR YOUR SON! Give this Christmas gift to him – enhance our hope and join us to make our efforts Stronger in DERAILING DUCHENNE every child, everywhere. Do it now

– Jen & Tony Dumm

Parents of John Owen Dumm (8) missing 49 & 50

Founders of John Owen’s Adventure, Inc

North Royalton, Ohio

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