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March 2012 Blog Posts (24)


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

Dealing with setbacks

 Last December when I was training for the 2012 Goofy run at WDW I participated in a 25k trail race. This was supposed to be the last big training event and then I would begin tapering for WDW.

 I love trail running, I hit the trails every chance I get and this race was taking place right where I run every week so I was excited to really do well. We all lined up and away we went looping around a small lake before we hit the trails. Ah the trails, my home away from home. This is where…

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Added by Darren Corona on March 27, 2012 at 10:15am — No Comments

Future MDA spokes-kid? lol

 

Andrew just started repeating this out of nowhere during dinner the other day.

 

 In case that didn't work, here's the link youtube

As always, you can follow along with us at www.HomemadeTaterTot.blogspot.com

Added by Katherine Palmer on March 26, 2012 at 10:00am — No Comments


Staff
Prosensa’s Clinical Development Plan Update – March 2012

In parallel to the on-going development of the lead compound PRO051/GSK2402968, which is being developed by GSK with an active involvement of Prosensa, there are five more compounds for Duchenne in Prosensa’s pipeline.  Below you can find an update about the current state of development of these compounds.



Prosensa is currently conducting a clinical study to investigate the effect of PRO044 in boys with Duchenne muscular dystrophy, who have a dystrophin gene mutation amenable to…

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Added by PPMD on March 26, 2012 at 9:41am — 10 Comments

my image

Josiah sat next to me brushing his teeth. While  I brushed my hair looking in  his large bathroom mirror,  I glanced over at him.  I was  so happy and proud that  he could still manage this task by himself. Reaching over towards him I placed a free standing counter mirror in front of him, just in case he wanted to see for himself the beautiful job he was doing. Josiah kept busy with his grooming and never glanced over at the mirror.   Smiling at him I suggested he see how gleaming white his…

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Added by Rita Felling on March 25, 2012 at 11:59pm — 2 Comments

Planning an Event to promote research and awareness is very difficult, but worth it.

So, I have been thinking about the type of event that I would be interested in hosting. I kept racking my brain for months, I want an event that also promotes Family Time...Quality family time.



Then the other day, an idea hit me. We have a local amusement park that doesn't get as many daily visitors as when I was a child. So, I am getting all my event details worked out, before pitching the idea to the park management. I have started sending out emails to other local venues asking… Continue

Added by Dreama Whitlock on March 25, 2012 at 11:03am — No Comments

Complicated choices

I’d like to say this has “been one of those days”, but if the truth be known it’s more like one of those years.  Life for families affected by Duchenne muscular dystrophy, I have to guess like life for most other people, has its share of ups and downs.  The difference for those living with Duchenne is that it seems once you begin to feel some stability in your life the proverbial rug gets pulled from beneath your feet and reality not only…

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Added by Brian Denger on March 23, 2012 at 8:41pm — 3 Comments

Great eye checkup today!

Riley had is appt with the eye doctor today and he is doing great. he passed with flying colors. I have my appt with the doctor tomorrow to find out if I am a carrier. Duchenne is the most difficult thing to understand, I can't imagine that I would be a carrier and pass it to my daughter to pass to her children, yet I didn't pass it to my own son. Just mind-boggling.

Added by Dreama Whitlock on March 22, 2012 at 2:02pm — 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

Life now, living with Duchenne

October 17th, the second time in my life that I heard the most agonizing words...my grandson Riley has Duchenne. Riley's older brother Aydon was my first born grandchild and passed away at 6 weeks of age from heart defects. When Riley was born, I thought will God take him too. It was hard to let myself love him completely, I was scared, but Riley broke that wall of fear right down and took my heart in his hands.



Knowing that Riley has Duchenne's is very difficult for all of us. Riley… Continue

Added by Dreama Whitlock on March 19, 2012 at 10:40pm — 2 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

A little discomfort and joy!

Jon’s second semester at college has been rewarding and frustrating.  While Jon is on campus, things are a little easier.  Jon has a power chair that is stored on campus and he can navigate independently.  Jon doesn’t have a power chair yet permanently.   He can still walk and get in and out of a regular car, with a little…

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Added by Christine Piacentino on March 18, 2012 at 1:52pm — 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
My Voice: Ricky Tsang, 30 years old

Our Featured Voice for March 2012 is 30-year-old, Canadian author, Ricky Tsang. If you are part of the Facebook world, you probably are friends with Ricky or have at least seen his name around. He is the author of the recently released, …

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Added by Will Nolan on March 13, 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

Bike Story 4 Cory

http://www.facebook.com/l.php?u=http%3A%2F%2Fbikestory4cory.blogspot.com%2F&h=TAQHTMDv6

An inspiration--two young men are going to cycle cross-country for their senior project. And at the same time they will raise funds and awareness of Duchenne. They plan to meet up with the Jett riders halfway through and finish their trip en masse.

Added by Christine Stalling on March 12, 2012 at 1:59pm — No Comments

Assisted Humility

The door frames have been widened, the elevator is in.

Electric wires, like raw nerves, have been grafted by plaster skin.

For one…

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Added by Andrea Cleary on March 9, 2012 at 10:00am — 5 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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