(SOS) Sign To Save Our Sons, give our Duchenne boys their miracle. FDA Approve Drisapersen
This petition had 209,025 supporters
My name is Tonya Carlone, mother of Gavin who has Duchenne Muscular Dystrophy. This is a rare fatal muscle weakening disease. Typically boys with Duchenne lose their ability to walk by age 12 and are confined to a wheelchair. By their late teens they are unable to move their arms and ventilation is usually required. Those who suffer from Duchenne usually die from cardiac failure around the age of 25, but many die sooner from complications.
My son and many other Duchenne boys have been participating in a clinical drug trial for an experimental medication, called Drisapersen. The FDA was expected to make a decision whether or not to approve this medication by Christmas, but at the last minute delayed the decision until January. A decision could come down any day now. This medication has allowed my son, Gavin to be able to ride a 2 wheel bike, to play on a soccer team, to run and play with his healthy 10 year old peers. Dr. Craig McDonald of UC Davis Medical Center and a Duchenne expert of over 30 years, has stated that he has never seen a boy with Duchenne at the age of 10 have as much function as Gavin.
Sadly, many of us in the Duchenne community had this medication taken from us before and we watched our precious children rapidly decline. Thankfully, after many months off Drisapersen, our children were able to re-dose. These kids are thriving once again. We are begging for your support to save our children’s lives. We know with 100 percent certainty what will happen to our children without Drisapersen’s approval, they will die.
Please sign this petition and help us urge the FDA to approve this life saving medication. There are many other children who could benefit from this treatment who are anxiously awaiting to have access to this medication as well.
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Tonya Carlone needs your help with “(SOS) Sign To Save Our Sons, give our Duchenne boys their miracle.”. Join Tonya and 209,024 supporters today.