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Duchenne Muscular Dystrophy

'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.

Boy Flies Like Iron Man, With Help From Make-A-Wish

The Huffington Post | Ed Mazza | Posted 04.16.2014 | Parents

An 8-year-old Nebraska boy battling a rare disease dreams of flying like his favorite superhero, Iron Man. And for one shining moment, that dream came...

This 'Happy' Flash Mob Wants To Save A Sick Boy's Life

The Huffington Post | Eleanor Goldberg | Posted 03.21.2014 | Impact

We’ve seen plenty of heartwarming flash mobs, but none with quite as bold of a mission as the crew that just came out of Colorado. On Tuesday, a...

30 Hours of Dancing, 30 Hours of Happiness

Lori Janjigian | Posted 05.13.2014 | Impact
Lori Janjigian

By dancing for 30 hours straight, I played a role in helping Team Joseph, a foundation that helps families battling Duchenne Muscular Dystrophy, the most common degenerative genetic muscle disease affecting children.

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.

A Race Against the Clock: Parents, Researchers Lobby for Accelerated Duchenne Muscular Dystrophy Research

Lauren Caruba | Posted 05.04.2014 | College
Lauren Caruba

On Friday, March 7, more than 1,000 Northwestern students will gather in a large white tent behind the university's student center. Kicking off at 7 p.m., the students will dance for 30 hours straight into the early hours of Sunday morning just days before final exams.

8-Year-Old Climbs Mount Kilimanjaro For A Cure

The Huffington Post | Eliza Fisher | Posted 07.03.2012 | Los Angeles

The Los Angeles area lays claim to a lot of impressive folks, from Oscar-winning actors to renowned writers. Now, there's one more resident that Angel...

Jacob Gunvalson, Terminally Ill, Can't Demand Experimental Drug: Court

AP | Posted 05.25.2011 | Business

WASHINGTON — A pharmaceutical company does not have to provide an experimental drug to a Minnesota teen who is terminally ill with a rare form o...