Santa Clarita boy’s family asks the community to sign a petition to help provided needed drugs to those suffering from Duchenne Muscular Dystrophy
The family and friends of Peyton Marquez, an 8 year-old Santa Clarita boy with Duchenne Muscular Dystrophy, are seeking help to push a U.S government petition over the 100,000 signature threshold needed for action to be taken.
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Duchenne is a terminal disease that affects 1 in 3,500 boys in the U.S, according to the National Human Genome Research Institute. It is characterized by a progressive loss of muscle function and weakness.
Peyton was officially diagnosed with Duchenne on January 2, 2013.
Ethan Marquez, Peyton’s father, said he hopes the petition will be a way to make beneficial drugs available to his son as well as other boys.
“There are currently two drugs in clinical trials that have shown signs of benefitting boys with Duchenne and the [Food and Drug Administration] is currently stalling further clinical trials on them,” Ethan said. “[Peyton] has the genetic defect that would allow him to be eligible to take the drug and our goal is to get him started [on it] as soon as possible.”
Bonnie Marquez, Peyton’s mother, said Peyton and other boys with Duchenne do not have the time for the prolonged clinical trials that typically precede the release of a new drug by the FDA.
“Our sons don’t have the time to wait for 10 or 20-year studies,” Bonnie said. “We want to put him on [the drug] because otherwise we don’t have any other choices. If the FDA doesn’t approve [the drug], its like a death sentence for our son.”
The petition asks the Obama Administration to push the FDA to use Accelerated Approval of safe and effective therapies for boys with Duchenne.
Accelerated Approval allows the FDA to approve certain drugs based on their proven usefulness for a specific purpose, such as a drugs ability to shrink a cancerous tumour, rather than waiting on the results of a prolonged clinical trial, according to the FDA’s website.
The U.S government is required to consider and issue an official response to all petitions able to obtain 100,000 signatures.
As of today, the petition requires around 28,000 more signatures to reach this threshold, and the Mar. 29 deadline is coming up fast.
To help Peyton, and the other boys living with Duchenne in the U.S, visit http://theracetoyes.org and add your name to the government petition.
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Source: Santa Clarita News