PPMD's Blog – February 2012 Archive (7)

Action Alert! We need your support!

While our Duchenne advocates (like 10 year old Anthony, pictured right) are out on the Hill today, urging their Members of Congress to preserve critical funding for Duchenne research and education programs, we need YOU to take a moment and advocate from home with us!



All it takes is a call or an email to make sure your voice is heard! Check out our Take…

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Added by PPMD on February 28, 2012 at 10:09am — No Comments

PPMD Announces Board Approved FDA Policy

As you know, ensuring appropriate federal funding for Duchenne research has been a cornerstone of PPMD’s advocacy agenda over the past decade. Our persistence – your persistent and collective voice - has paid off with over $250 million directed to Duchenne research.

 

Today we now find ourselves at a pivotal moment with multiple potential therapies for Duchenne in various stages of the development process. We must now, once again, look forward to what is next for Duchenne.…

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Added by PPMD on February 21, 2012 at 10:00am — No Comments

Go West! Join PPMD in a variety of West Coast events!

We are excited to announce a 2012 calendar full of events on the West Coast!

 

West Coast Connect Meeting

First, PPMD is excited to host our first West Coast Connect Meeting, April 13-15, 2012 in San Diego, CA. This will be a great opportunity to get the latest research updates on a variety of different…

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Added by PPMD on February 13, 2012 at 4:30pm — No Comments

Update from Gunter Scheuerbrandt

Biochemist Gunter Scheuerbrandt has been following exon skipping for the international Duchenne community for years. Read the latest update from one of this community’s greatest allies.

 

Quick Links

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Added by PPMD on February 8, 2012 at 11:30am — No Comments

Upcoming Webinar: Exon Skipping

PPMD welcomes Dr. Padraig Wright from GlaxoSmithKline as our guest for a webinar on February 22, 2012 at 1pm eastern.

 

  • Topic: Exon Skipping
  • When: Wednesday, February 22, 1pm eastern
 
About

GSK2402968 is an antisense oligonucleotide…

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Added by PPMD on February 6, 2012 at 4:30pm — No Comments

Newborn screening for Duchenne muscular dystrophy

Guest blog by Kathi Kinnett RN/CNP

 

Currently there is no newborn screening for Duchenne in the United States. However, groundbreaking work from Jerry Mendell’s lab at The Ohio State University may have a hand in changing this.

 

Mendell’s recent pilot study was funded by the Centers for Disease Control (CDC) and…

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Added by PPMD on February 2, 2012 at 10:00am — 1 Comment

Interview Study Recruiting: PTC ataluren trial placebo group

Was your son in the placebo group in the PTC ataluren trial?

 

PPMD has partnered with researchers at the National Institutes of Health (NIH) for an interview study. The purpose of this study is to describe the experiences of people involved in phase II clinical trials of ataluren for Duchenne muscular dystrophy. We are interested in learning about motivations for being in the clinical trial, expectations of the trial, the experience of the trial, and interactions between families…

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Added by PPMD on February 1, 2012 at 2:00pm — No Comments

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