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DMD

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DMD Drug Sales Halted Amid Controversy

DMD Drug Sales Halted Amid Controversy

  • Post author:Rebekah
  • Post published:February 14, 2017
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

What at first glance sounded like nothing but good news, the FDA's approval of an Duchenne Muscular Dystrophy drug, has complicated undertones. It was announced last week that Emflaza (deflazacort) was approved…

Continue Reading DMD Drug Sales Halted Amid Controversy
Big Changes for DMD Community: Innovative Research and Beer
Source: Pexels.com

Big Changes for DMD Community: Innovative Research and Beer

  • Post author:Sabina Kennedy
  • Post published:February 7, 2017
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

If you’re like most people (especially me), you’ve never heard of nicotinamide riboside (NR) before. But that may change very soon, especially for the Duchenne muscular dystrophy (DMD) community. What…

Continue Reading Big Changes for DMD Community: Innovative Research and Beer
How You Can Help This Family Battling Duchenne Muscular Dystrophy

How You Can Help This Family Battling Duchenne Muscular Dystrophy

  • Post author:Patient Worthy Contributor
  • Post published:February 1, 2017
  • Post category:Duchenne Muscular Dystrophy

Duchenne Muscular Dystrophy (DMD) is a degenerative disease that causes muscle weakness in the hips, thighs, shoulders and then later, in the heart and respiratory systems. This Australia family is…

Continue Reading How You Can Help This Family Battling Duchenne Muscular Dystrophy
Where Ya Been Hiding Out for the Last 21 Years?
Source: www.pixabay.com

Where Ya Been Hiding Out for the Last 21 Years?

  • Post author:Erica Zahn
  • Post published:November 30, 2016
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

Years ago, there was a television show called Tales from the Crypt. From what I remember, a creepy-looking hand would open a creaky-sounding door and the viewer would "enter" the…

Continue Reading Where Ya Been Hiding Out for the Last 21 Years?
Duchenne Muscular Dystrophy Wins One With the FDA
Source: Pixabay.com

Duchenne Muscular Dystrophy Wins One With the FDA

  • Post author:Erica Zahn
  • Post published:November 22, 2016
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

A few months ago, I went on a rant about the FDA's failure to approve a drug that would benefit children with Duchenne muscular dystrophy, or DMD, a muscle-wasting disease.…

Continue Reading Duchenne Muscular Dystrophy Wins One With the FDA
Launching Vision and Values for DMD Support
Source: pixabay.com

Launching Vision and Values for DMD Support

  • Post author:Sabina Kennedy
  • Post published:November 14, 2016
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

Talking to the parents or family of a child with a serious illness can be nerve-racking and uncomfortable. Sometimes avoiding the family can seem easier than facing a difficult situation.…

Continue Reading Launching Vision and Values for DMD Support
If Only There Were More Kids in the World Like This One
Source: pixabay.com

If Only There Were More Kids in the World Like This One

  • Post author:Lady Kehveen Abernathy
  • Post published:November 11, 2016
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

Any of you ever think about running a marathon? I know I have. I've thought about it. Have I run a marathon? NOPE! Sure haven't. That sh*t looks hard. Look,…

Continue Reading If Only There Were More Kids in the World Like This One
Wonderful and Remarkable News for DMD Community
[Source: Pixabay.com]

Wonderful and Remarkable News for DMD Community

  • Post author:Sabina Kennedy
  • Post published:November 4, 2016
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

On the surface, it seems self-evident that social collaboration can have a positive impact--especially when it comes to Duchenne muscular dystrophy (DMD). Working together with all invested participants to influence…

Continue Reading Wonderful and Remarkable News for DMD Community
The FDA and DMD Drug Approval – A Delicate Dance

The FDA and DMD Drug Approval – A Delicate Dance

  • Post author:Farrah Fontaine
  • Post published:October 24, 2016
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

If you, or someone you love, has Duchenne muscular dystrophy (DMD), then each new possible drug that's brought before the FDA brings with it a sense of hope. Race to…

Continue Reading The FDA and DMD Drug Approval – A Delicate Dance
Amazing Boy With Muscular Dystrophy Shocks His Community

Amazing Boy With Muscular Dystrophy Shocks His Community

  • Post author:Farrah Fontaine
  • Post published:October 19, 2016
  • Post category:Duchenne Muscular Dystrophy

When you were a kid and planning your future, what events did you imagine? Your first car? Your prom? Your graduation? Your wedding? For this boy with Duchenne muscular dystrophy, he…

Continue Reading Amazing Boy With Muscular Dystrophy Shocks His Community
The Fundamentals of Caring – A Netflix Original Featuring DMD

The Fundamentals of Caring – A Netflix Original Featuring DMD

  • Post author:Patient Worthy Contributor
  • Post published:July 14, 2016
  • Post category:Duchenne Muscular Dystrophy

Netflix recently released an original dark comedy that features a young boy from the UK with Duchenne Muscular Dystrophy whose caregiver (played by Paul Rudd) is new at his job and…

Continue Reading The Fundamentals of Caring – A Netflix Original Featuring DMD
This Boy with DMD Makes Mind Over Matter Look Easy
Pixabay

This Boy with DMD Makes Mind Over Matter Look Easy

  • Post author:Winnie Nash
  • Post published:June 16, 2016
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

It's no easy battle, but for Tayjus Surampudi and many others, muscular dystrophy is a battle worth getting up and fighting against. Tayjus is a student at Harvard. And if…

Continue Reading This Boy with DMD Makes Mind Over Matter Look Easy
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