One moment. Make it matter.

Posted by: Christine McSherry on March 10, 2014


Dear Friends,

At 211 degrees water is just really hot. But one more degree makes it boil. One degree shifts it from a really hot liquid to a force that can power locomotives. One degree. One that matters.

In 1920, Tennessee was the final state needed to ratify the 19th amendment that allowed women to vote in the United States. One state. In the Tennessee House of Representatives, 50 of 99 members voted yes. Just one vote over half. One vote that tipped the scales. One that mattered.

Rosa Parks was a little lady with a big mission. One woman who refused to move to the back of the bus. One statement. One moment. One that mattered.

There are pivotal moments Ė moments when we should never underestimate our power and never doubt our impact. These are moments when decisions are made, actions are taken, lives are changed. Moments where we are either all in, or weíre not. Moments where we are part of the solution or we turn away from action. They are moments that matter. You matter. There is no middle ground. Itís either yes or no. Today, we need you to say yes. Our childrenís lives literally depend on it.†Make a difference.

We have the opportunity to change the course of a devastating, horrific disease that destroys our childrenís muscles and hearts and lungs and lives. We have the opportunity to take our children back from the clutches of Duchenne. We can tell the FDA and the White House that weíve had enough. We will not wait any longer. Our children are not expendable, they are not a science experiment, and they are dying while the FDA spends too much time making a decision. We need the White House to step in and do the right thing. And you can make that happen.†Are you ready? If not, keep reading for details.

We are asking you to sign a petition that urges the Food and Drug Administration (FDA) to use the Accelerated Approval pathway for approval and access to safe, effective therapies for Duchenne muscular dystrophy. Congress gave the FDA the ability to do this years ago, and we need the FDA to use this pathway today. If we can get 100,000 signatures on this petition within 30 days, the White House will review it and issue an official response.†Every person, every show of support, every single signature matters.

There is a new drug called Eteplirsen that has shown that it works and it is safe, and it will help 13% of children with Duchenne. And quite frankly, the FDA has given themselves too much time Ė they have been in the decision making process for far too long. And all you have to do is click. Itís easy. This opportunity is what defines us. Itís our ability to take action, to impact the outcome, to create change, to save lives. Itís a privilege and a gift.†It is a responsibility.

Do it for Austin. Do it for Jett. Do it for Gus, Charley, Aidan, Ryan and Jack and Harrison. Do it for Dominic, Colin, Caleb, Michael, Pietro, Matthew, Nolan, Jack, Joseph, Dusty, Christopher, Brayden, Sam, Ian, James, Jacob, Nick, Danny, Tanner, Anthony, Alan, Tim, Max, Andrew, Mark, and Matthew, and countless others. †Do it because itís so easy and itís the right thing to do. My son is depending on you.†All the children with Duchenne are depending on you.

please visit†www.theracetoyes.org†for more information or go right to the petition to save time.

https://petitions.whitehouse.gov/petition/urge-fda-say-yes-accelerated-approval-safe-effective-therapies-children-duchenne/qtRww0rN

 

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