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Eteplirsen

Duchenne Is in an Emergency. It's Time to Pull the Brake

Tracy Seckler | Posted 04.01.2016 | Science
Tracy Seckler

Science has brought us to an incredible point: We have the power to save people -- including my own child -- from being killed by rare and specific genetic mutations. But this historic opportunity will slip away. We have already waited far too long.

Children's Hearts and Legs Fail While 'Flummoxed' FDA Fumbles

Tracy Seckler | Posted 01.10.2015 | Politics
Tracy Seckler

The FDA's pronouncement that the drug company did not have enough data to warrant a New Drug Application was a complete reversal of the agency's stance just six months earlier. And it was based on erroneous logic and false information.

'I Wish My Son Had Cancer': Dad Stands By Brutally Honest Awareness Campaign

The Huffington Post | Eleanor Goldberg | Posted 08.12.2014 | Impact

He knew his candid comments would cause a firestorm, but Alex Smith will do whatever it takes to help find a cure for his son’s little-talked-about ...

President Obama Could Help Save Dying Children, But Apparently He Prefers Budweiser

Tracy Seckler | Posted 08.04.2014 | Impact
Tracy Seckler

On March 27, the very day we reached 100,000 signatures, another petition on the White House's We the People website also hit the mark. Sponsored by Budweiser and promoted through a professional ad campaign, "Declare Major League Baseball Opening Day a National Holiday" has already been graced with an official White House reply.

Needless Delay for a Medicine That Could Save Kids' Lives

Tracy Seckler | Posted 05.05.2014 | Healthy Living
Tracy Seckler

My advisors tell me to keep working the system, to keep the door cracked open by giving FDA officials opportunities to "save face" and encourage a new drug application for eteplirsen. But I cannot allow any more time to go by.

Two Brothers Have Same Debilitating Condition, But Only One Approved For Experimental Drug

Posted 08.20.2012 | Healthy Living

Two Vermont brothers have the same debilitating condition -- Duchenne muscular dystrophy. Max Leclaire, 10, is on an experimental drug called eteplirs...