“What would you do if your child was diagnosed with a killer of a disease and a treatment was within your reach, but it was up to the FDA to determine your child’s fate?”
Friends - Join us on this critical step to derail this muscle killer
once again we are asking you to ACT on behalf of John Owen and all boys with Duchenne as we travel to DC this Friday to beg the FDA to say YES to ETEPLIRSEN on 1.22.16
Please share our website, share this Press Release, Contact your CONGRESSMAN with the message below.......Now is the Time
Andrew Nichols Before Eteplirsen and After Eteplirsen FOR IMMEDIATE RELEASE CONTACT: Jen Dumm (440) 570-2167
Jodi Nichols (740) 502-6519
Two Ohio mom’s quest to change the world for their fatally ill sons
Jodi Nichols, Newark, Ohio and Jen Dumm, North Royalton, Ohio will testify at the Open Public Hearing at FDA Headquarters on January 22, 2016. Both their sons, Andrew Nichols (9) and John Owen Dumm (12) are part of a 2 year drug trial at Nationwide Children’s Hospital in Columbus, Ohio. The drug, Eteplirsen, has changed the course of the fatal illness the two boys share, Duchenne Muscular Dystrophy. The mothers will join over 300 Duchenne families, all present to urge the FDA to say Yes to Eteplirsen.
Duchenne is a genetic muscle disease, which since birth, has deteriorated every muscle in these boys, to the point of wheelchair dependence and 24/7 care. Once active, seemingly normal boys, Duchenne over time has robbed the simple things like, walking, brushing teeth and independence. Duchenne is a brutal muscle killer that until Eteplirsen, would not be slowed or stopped.
Both boys are gaining strength while on this experimental drug. Both are able to move arm, leg and trunk muscles that had been lost, which both mothers thought was permanent. “Eteplirsen has dramatically slowed the course of this fatal illness in John Owen, he has strength in every muscle that we thought was gone for good.” Says Jen Dumm.
John Owen Dumm Before Eteplirsen and after 40th treatment of Eteplirsen The FDA is under fire by the rare disease community for recently denying the New Drug Application of Bio Marin’s drug, Kyndrisa, a similar drug as Eteplirsen. This despite the urging of Congress to fast track such drugs through the FDA via the Food and Drug Safety and Innovation Act (FDASIA) passed in 2012.
Eteplirsen is safe, both boys have shown zero negative side effects and the list of new found skills they can perform is endless.
These mothers beg for your support as they journey to Washington, DC on Friday 1/22/2016 to urge the FDA to pass this life changing drug produced by US Biotech Company, Sarepta Therapeutics. Contact your congressman (click for House and click for Senate) and urge them to sign the Congressional Letter circulating on Capitol Hill in support of Duchenne Families. Congress has given the FDA authority to approve drugs, such as Eteplirsen based on safety of the drug.
“What would you do if your child was diagnosed with a killer of a disease and a treatment was within your reach, but it was up to the FDA to determine your child’s fate?” Asks, Jodi Nichols. “Please join Jen and I as we fight for our boys and urge your congressman to sign this letter encouraging the FDA to end our fight and the fight of many mothers across the country.”
About Duchenne: Duchenne Muscular Dystrophy is 100% fatal and typically only affects boys. A very tiny part of the boy’s X chromosome was deleted. This deletion makes it impossible for him to build muscles because the message ‘build dystrophin’ never gets to his brain. Eventually, all of the muscles in his body will breakdown making it impossible to walk, eat and breathe. Soon after that his little heart muscles will breakdown as well and we will be forced to say goodbye to him well before he has fully enjoyed his 20’s. One in 3,500 boys has Duchenne Muscular Dystrophy. Until Eteliprsen, there has been no effective treatment for Duchenne.
About Sarepta Therapeutics: Sarepta Therapeutics is a biopharmaceutical company focused on the discovery and development of unique RNA-targeted therapeutics for the treatment of rare, infectious and other diseases. The Company is primarily focused on rapidly advancing the development of its potentially disease-modifying Duchenne muscular dystrophy (DMD) drug candidates, including its lead DMD product candidate, eteplirsen, designed to skip exon 51. Sarepta is also developing therapeutics for the treatment infectious diseases, such as drug-resistant bacteria and other rare human diseases. For more information, please visit us at www.sarepta.com.
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Eteplirsen is safe, both boys have shown zero negative side effects and the list of new found skills they can perform is endless.
These mothers beg for your support as they journey to Washington, DC on Friday 1/22/2016 to urge the FDA to pass this life changing drug produced by US Biotech Company, Sarepta Therapeutics. Contact your congressman (click for House and click for Senate) and urge them to sign the Congressional Letter circulating on Capitol Hill in support of Duchenne Families. Congress has given the FDA authority to approve drugs, such as Eteplirsen based on safety of the drug.
“What would you do if your child was diagnosed with a killer of a disease and a treatment was within your reach, but it was up to the FDA to determine your child’s fate?” Asks, Jodi Nichols. “Please join Jen and I as we fight for our boys and urge your congressman to sign this letter encouraging the FDA to end our fight and the fight of many mothers across the country.”
About Duchenne: Duchenne Muscular Dystrophy is 100% fatal and typically only affects boys. A very tiny part of the boy’s X chromosome was deleted. This deletion makes it impossible for him to build muscles because the message ‘build dystrophin’ never gets to his brain. Eventually, all of the muscles in his body will breakdown making it impossible to walk, eat and breathe. Soon after that his little heart muscles will breakdown as well and we will be forced to say goodbye to him well before he has fully enjoyed his 20’s. One in 3,500 boys has Duchenne Muscular Dystrophy. Until Eteliprsen, there has been no effective treatment for Duchenne.
About Sarepta Therapeutics: Sarepta Therapeutics is a biopharmaceutical company focused on the discovery and development of unique RNA-targeted therapeutics for the treatment of rare, infectious and other diseases. The Company is primarily focused on rapidly advancing the development of its potentially disease-modifying Duchenne muscular dystrophy (DMD) drug candidates, including its lead DMD product candidate, eteplirsen, designed to skip exon 51. Sarepta is also developing therapeutics for the treatment infectious diseases, such as drug-resistant bacteria and other rare human diseases. For more information, please visit us at www.sarepta.com.
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ACT NOW - CONTACT YOUR CONGRESSMAN
1- Locate your House Rep and Senator using links
2- Email them and ask them to join Mike Fitzpatrick, Bill Keating and Pete King and sign the Congressional Letter circulating on Capitol Hill in support of Duchenne Families urging the FDA to fully utilize its authorities and the tools Congress included in the Food and Drug Administration Safety and Innovation Act (FDASIA). (you can simply copy this message and paste it)
3- Tell your congressman about Andrew and John Owen - that these boys need their support to derail this muscle killer through this Safe and Effective drug called Eteplirsen
4- Send this on to your family and friends!
God bless you and Godspeed Eteplirsen
2- Email them and ask them to join Mike Fitzpatrick, Bill Keating and Pete King and sign the Congressional Letter circulating on Capitol Hill in support of Duchenne Families urging the FDA to fully utilize its authorities and the tools Congress included in the Food and Drug Administration Safety and Innovation Act (FDASIA). (you can simply copy this message and paste it)
3- Tell your congressman about Andrew and John Owen - that these boys need their support to derail this muscle killer through this Safe and Effective drug called Eteplirsen
4- Send this on to your family and friends!
God bless you and Godspeed Eteplirsen
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