Featured Blog Posts – March 2012 Archive (8)


Staff
Take Action: Ask Your Representative to Co-Sponsor FAST Act

We are coming to you today to ask that you devote your attention and energy towards legislation that seeks to expedite the process FDA uses to review drug applications.…

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Added by Ryan Fischer on March 30, 2012 at 9:30am — No Comments


Staff
Bikram Yoga meets the Grand Canyon

Bikram yoga. Michelle had just been home talking about her Bikram practice. We talked about it a lot over the holidays. Michelle had been practicing for nearly 5 years. I wondered if I could survive 90 minutes in 105 degree heat. I had a range of readily available excuses; the easiest one was that there was no Bikram in Cincinnati, Ohio. And my unspoken reason was that I hesitated because I…

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Added by Pat Furlong on March 28, 2012 at 11:00am — No Comments


Staff
Steroids: A Certain Can of Worms (A Complicated State of Affairs)

Steroids. What regimen, what dose, for what individual? When to start? When to stop? A complicated question to be sure.

 

Steroids are a complicated story and have clearly changed the natural history of Duchenne. We know they work for some, for most in fact, but not all. We know they increase strength and prolong ambulation, and statistics back this up. Predicting ambulation is prolonged on average for 2+ years. But this is not the end of the story. Genetic modifiers have been…

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Added by Pat Furlong on March 20, 2012 at 2:00pm — 7 Comments


Staff
Important Webinar: AVI Clinical Trial Update

AVI Clinical Trial Update

Parent Project Muscular Dystrophy presents an AVI webinar on Wednesday, March 21 at 1pm eastern. The webinar will cover a pre-data update on AVI BioPharma's Phase IIb study evaluating eteplirsen for the treatment of Duchenne patients with mutations amenable to exon-51 skipping, and will be lead by Chris Garabedian, the CEO of AVI…

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Added by PPMD on March 19, 2012 at 2:30pm — No Comments


Staff
Our View

So many times we view the world from the dark side, the part where we worry our sons (and daughters) may never see x or y, may never have this or that opportunity. I recall Kevin Smith standing up and telling us how he promised Zach there would be no limits on what he wanted to do or see, that if he wanted to see the top of a mountain, Kevin would put him on his back and show him the view. I think any of us would do that for our child or for our friend.

 …

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Added by Pat Furlong on March 14, 2012 at 4:30pm — No Comments


Staff
Rare Disease Leaders’ Forum 2012

This is my first visit to San Francisco, the city by the bay, home of the Golden Gate Bridge and Tony Bennett’s song “I Left My Heart in San Francisco,” a song from my younger days and one that, even today, sometimes gets in my head and repeats and repeats.



Some time back I was invited to…

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Added by Pat Furlong on March 13, 2012 at 10:30am — No Comments


Staff
Volunteers needed to Dine Out for Duchenne!

Do you love to go out to eat? Do you want to help fundraise, but don't have the time? Then this is the event for you!! You can participate whenever you visit a new restaurant without doing extra work! It's fast and easy!! 

 

Dine Out for Duchenne is a week-long, online event where people can…

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Added by Danielle Garrigan on March 12, 2012 at 4:30pm — No Comments


Staff
Co-Blog: Gravity

PPMD President Pat Furlong and Colorado FACES Coordinator Ivy Scherbarth discuss the bravery of their sons, and all young men fighting Duchenne. Please, share your thoughts after reading this month’s co-blog.



Strength

by Pat Furlong

Weakness. A familiar word in the context of…

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Added by Pat Furlong on March 8, 2012 at 4:30pm — 3 Comments

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