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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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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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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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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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

• Interview with Dr. Annemieke Aartsma-Rus…

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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

GSK2402968 is an antisense oligonucleotide…

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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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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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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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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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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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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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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