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April 2012 Blog Posts (18)


Staff
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…

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

The Cory Story of HOPE: Let's Go VIRAL FOR A CURE!

WATCH-COMMENT-SHARE!

Please give five minutes of your life so that my son and thousands of other boys might have a full life!  You can help in three easy ways (and it won't cost you a cent): 1) Watch, 2) Comment, and 3) Share (and encourage others to watch and share!) 

I hope this video goes viral enough to get positive attention from the likes of…

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Added by David Stalling on April 28, 2012 at 2:00pm — No Comments

A Letter to Cory from Friend and Writer Ben Long

Hi Cory.

You probably don’t remember me, but I am an old friend of your dad. We used to work a lot together and always had fun at it. I enjoy your dad because he is full of surprises and never shy about speaking his mind. I bet you are like that, too.

You and I met a few years ago, camping at…

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Added by David Stalling on April 27, 2012 at 7:23pm — No Comments

Week 1 - One Step to End Duchenne

The days are full. On Wednesday I hiked 20 to Lake Morena and 23 yesterday to Mt Laguna. Got a ride back to the two-day kickoff get together at Lake Morena. Take off again Sunday morning. Legs are sore so two recovery days will be great and I will learn a lot. People are already calling me OneStep. Everyone uses trio names. Hope you guys are great!



Video Update &…

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Added by Tim "1Step" Rice on April 27, 2012 at 12:30pm — No Comments

A Note About Cory and Duchenne from Montana Governor Brian Schweitzer

 
"I'm cheering for Cory and commend the Stalling family for their advocacy on behalf of their son and the other children facing uncertain futures as a result of a diagnosis of Duchenne Muscular Dystrophy. Please support this family's efforts to increase awareness and improve the chances of finding the cure that might save Cory's life."…
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Added by David Stalling on April 27, 2012 at 1:24am — No Comments

Day Before Flying Out

 

Visit 1Step2EndDuchenne.org to learn more about my journey.

 



How can you help?…

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Added by Tim "1Step" Rice on April 24, 2012 at 1:00pm — 1 Comment


Staff
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…

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

Meet my great nephew Jonathan...

We all have special passions and causes that are important to us and that we support. Well, this summer, my family embraced a new cause which has had a tremendous impact on both my heart and my life. My great nephew Jonathan (3 years old) was diagnosed with Duchenne…

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Added by Tim "1Step" Rice on April 23, 2012 at 11:30am — No Comments

Introducing myself and my upcoming journey

I would like to introduce myself and briefly share my intention and vision regarding this venture. Recently I have noticed an inner rumbling to "get away," and given that my love of the outdoors felt undernourished over the past 20 years, I figured that I would head out West this summer on a backpacking trip for a week or so to help clear the traffic jam in my head. Among other…

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Added by Tim "1Step" Rice on April 23, 2012 at 11:00am — No Comments


Staff
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,…

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

Rock & hard place

Doug might be moving into a block funded house with three other people requiring high level support. They offered it to him finally last October and at the time there was space for 2 verbal people, including himself. This is "cripple nirvana" according to Doug, the kind of house one can only dream of right in the cultural centre of town, next door to one place he volunteers. But there was always a problem, nobody to wake up to him at night. They want him to trial this house, since I shook up…

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Added by Deb Robins on April 13, 2012 at 3:02am — No Comments

Capstone Project

Heading into my final two classes of my Masters program and could use a little help, especially from those outside of Wisconsin.

http://mservais.blogspot.com/2012/04/capstone-project-help.html

Thanks in advance....

Mark Servais

Added by Servais Family on April 8, 2012 at 12:18pm — No Comments


Staff
My Voice: Francis Desmond, 13 years old

Sometimes the best way to tell your story is through pictures. We can feel what another feels by seeing things the way they see them. Francis Desmond is an 8th grader who likes to draw. He also has Duchenne muscular dystrophy. Francis and his dad, Steven Desmond, decided to turn their journey into art and have just their father/son illustrated project, A…

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Added by Will Nolan on April 5, 2012 at 2:00pm — No Comments


Staff
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…

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


Staff
Great fundraising ideas anyone can try!

Are you trying to come up with an idea on how to fundraise for PPMD? Or has someone told you that they want to fundraise for PPMD, but they don't know what to do? Here are some really cool fundraising ideas that people are putting together right now in the community, which we're really excited about… Hopefully they inspire you!



Dining Out

Dine…

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Added by Danielle Garrigan on April 4, 2012 at 1:30pm — No Comments


Staff
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…

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

Our first official donation to our event!

Terrific news on a donation for the event that we are proposing to Camden Park! Riley's World and Parent Project Muscular Dystrophy A Celebration Of Life! I just received an email from Sleepy Hollow Chalets in response to my letter explaining our proposal and what we are doing: here is their letter:



Hi Dreama,



Thanks for contacting us. We are definitely interested in supporting this cause. We will most likely donate a couples only, two-night romantic getaway. We can send a… Continue

Added by Dreama Whitlock on April 1, 2012 at 11:46pm — 2 Comments

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