PPMD's Blog (474)

Reminder: Register Today for 2012 West Coast Connect Meeting

By now we hope you have heard that Parent Project Muscular Dystrophy will be hosting our first West Coast Connect Meeting, April 13-15, 2012 in San Diego, CA at the…

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Added by PPMD on March 7, 2012 at 10:00am — No Comments

Vote for Duchenne in the 2012 Neuro Film Festival!

The trailer for "Duchenne With A Future: The Power To Live," a documentary about the success factors of living an adult life with Duchenne, has been entered into the American Academy of Neurology's 2012 Neuro Film Festival! By enrolling we hope to promote research and raise Duchenne awareness.…



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Added by PPMD on March 6, 2012 at 7:00pm — 1 Comment

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

This Is It! Time to Tackle Duchenne!

This Is OUR Moment!

Tomorrow is the 4th Annual Coach To Cure MD and we hope your day includes watching or attending one of the hundreds of games that will be displaying our patches. This community has come together yet again to tell the country about Duchenne, to raise awareness,…

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Added by PPMD on September 23, 2011 at 4:28pm — No Comments

Five Days Left & Plenty of Time To Win!

Today's the Day: Get in the Game!



With five days left until Coach To Cure MD on September 24, you probably think that it's too late to join our team this year. But it's not! Participating in Coach To Cure MD has never been easier:

 …

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Added by PPMD on September 19, 2011 at 2:13pm — No Comments

Leveraging the United Way: Raise money to fight Duchenne

The annual, Fall United Way campaigns are getting underway throughout the country. Last year many families had great success leveraging both the annual United Way campaign and Combined Federal Campaign (CFC) to raise money to fight Duchenne. Many people have a tradition of donating to the United Way, are expecting their company campaigns to start, and are looking for good causes to earmark…

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Added by PPMD on September 6, 2011 at 3:00pm — 2 Comments

Conversation with Dr. Kole - Duchenne a stem cell disease?

Dr. Ryszard Kole from AVI Biopharma and PPMD President Pat Furlong further reflect on recent findings that Duchenne is a stem cell disease. Read the discussion below, as well as, Pat’s previous blog.



I read with interest your blog yesterday regarding the Cell paper on Duchenne that came out on Monday. I can very well understand the excitement, as well as some possible confusion, that the paper generated among PPMD…

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Added by PPMD on December 20, 2010 at 12:30pm — 23 Comments

Points to Ponder By, Pat Furlong

What messages do we send to our sons, to our friends, to our family? When Duchenne muscular dystrophy (Duchenne) enters our homes, all of us change. What we think changes. How we communicate changes. And maybe, just maybe, our communication changes in light of the hope we have on any given day.



Sometimes I hear themes that frankly worry me a bit and since this is my blog, I thought I would bring them up simply to think about. Nothing more.



I do know we are all waiting…… Continue

Added by PPMD on May 1, 2008 at 9:30am — 4 Comments

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