Featured Blog Posts – April 2012 Archive (5)

Conquering the canyon to end Duchenne

One thing about conquering the canyon: before you see it, it seems ok, reasonable, even possible. The moment you see THE GRAND CANYON, you think WTF and how does this 'conquer' business really work and where was my head when I was laughing and taking bribes? On day one, we meet the guides (Gene and Jo Ann Taylor), who discuss various trails, share their experiences and answer…


Added by Pat Furlong on April 30, 2012 at 11:30am — 2 Comments

Tis the Season, for FDA legislation called PDUFA

The Senate and House are moving closer to taking action on critical legislation focused on the Food and Drug Administration called PDUFA. Every five years Congress must pass a package of policies, known as user fees, that dictate the terms for the pharmaceutical and biotechnology and related industries to help fund the FDA and its review of candidate therapies. The bills…


Added by Ryan Fischer on April 24, 2012 at 10:30am — No Comments

The 2012 West Coast Connect Meeting

How many times have you explained something that happened, but in the retelling, the moment lost its punch?


I’m a fan of technology. Really. I love it that we are able to participate in meetings and conferences in real time, from anywhere in the world. It encourages, incentivizes, stimulates conversation on community and social networking sites. In…


Added by Pat Furlong on April 19, 2012 at 9:44am — 1 Comment

Getting it all done (Two Moms, Co-Blogging)

Everyone is in a race against the clock these days. Nowhere is that more the case though, than in this community. Dealing with Duchenne, on top of everything else life throws at you, can leave you feeling overwhelmed, inadequate, and exhausted. In their monthly co-blog, PPMD President Pat Furlong and Colorado FACES coordinator, Ivy Scherbarth discuss the ways we cope with this ticking clock while keeping our families happy, our son’s healthy, and our sanity in check. Read this month’s…


Added by Pat Furlong on April 5, 2012 at 12:53pm — 4 Comments

AVI Summary Announcement

This morning, AVI BioPharma released information discussing their findings thus far in their Phase IIb study of Eteplirsen.

About Eteplirsen

Eteplirsen uses AVI’s phosphorodiamidate morpholino oligomer (PMO)-based chemistry to skip exon 51 of the dystrophin…


Added by Kathi Kinnett on April 2, 2012 at 4:00pm — 15 Comments

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