• Petitioned The drug company Sarepta Therapeutics and the FDA

This petition was delivered to:

Sarepta Therapeutics Headquarters
The drug company Sarepta Therapeutics and the FDA
Food & Drug Administration
FDA

Release the much-needed drug eteplirsen to Austin Leclaire

    1. Jon Gilbert
    2. Petition by

      Jon Gilbert

      Chittenden, VT

Autsin Leclaire and his brother Max suffer from Duchenne muscular dystrophy. It is a rare muscle-deteriorating disease with no recovery. Max qualified for a blind test run of eteplirsen, but unfortunately his brother did not.

The family saw immediate improvement in Max and knew, since patients with this disease don't get better, he must be on the drug. They petitioned the company to release the drug to their son Austin as well. However, while Austin continues to deteriorate, Sarepta says, due to complex financial, regulatory, political and manufacturing roadblocks, Austin is ineligible. The condition is life-threatening. According to Max and Austin's mom, "We can't have one son who has had his life saved and is the first kid to survive this disease, while we have our other kid at home who is going to be the last kid to die from it."

It is important that Sarepta and the FDA understand that this can not happen, that they can not allow one brother to live, while his family watches the other lose his battle.

Recent signatures

    News

    1. Saxtons River youth with rare disease shoots first buck

      Jon Gilbert
      Petition Organizer

      Wouldn't it be awesome if Austin could see many more days like this? From the Bennington (VT) Banner:

      http://www.benningtonbanner.com/local/ci_21984049/saxtons-river-youth-rare-disease-shoots-first-buck

    2. Reached 200 signatures

    Supporters

    Reasons for signing

    • KAHILL SMITH MILFORD, MI
      • over 1 year ago

      Anything to stop a child's pain and eventual loss of life is important to me.

      REPORT THIS COMMENT:
    • Leslie Wachter FREDERICK, MD
      • over 1 year ago

      This drug should not be withheld. I believe it to be a moral obligation to society to release this drug and help the other children suffering with this disease. How horrible and unfortunate that this family is both happy to see one child improve while the other deteriorates. It is heartbreaking.

      REPORT THIS COMMENT:
    • Jon Gilbert CHITTENDEN, VT
      • over 1 year ago

      It's just the right thing to do. How can a family be forced to watch the government and a dug company let one child die, while they save the life of the other one?

      REPORT THIS COMMENT:
    • Lynn Juozilaitis AURORA, IL
      • over 1 year ago

      Because both children have the right to be healthy & happy.

      REPORT THIS COMMENT:
      • almost 2 years ago

      My Nephew has Duchenne. I want him to be saved so we can climb some 14ers in Colorado.

      REPORT THIS COMMENT:

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