PPMD Community

March 2015 Blog Posts (22)

Comedy and Disability: A Proverbial Tightrope

I came across and article today, regarding an unfavorable response Steve Harvey received from a fan and a mother of an autistic child, regarding a comedy routine he had on his morning radio show. Just as a caveat, I am wont to make fun of my own disability sometimes, not for the sake of being self-depreciating, but to rather use humor to accept an otherwise unfavorable situation. And I…

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Added by Benjamin F. Cumbo on March 31, 2015 at 2:47pm — No Comments

Recapping the FDA-NIH Dystrophin Methodology Workshop

I always felt a strong connection to the Duchenne community while working at the NIH. As you know, that connection and the incredible work of organizations like PPMD inspired me to jump full-time into the fight to end Duchenne.

Yesterday’s FDA and NIH dystrophin methodology workshop really…

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Added by John D. Porter, PhD on March 21, 2015 at 10:30am — 6 Comments


Staff
PPMD Participating in FDA-NIH Dystrophin Methodology Meeting on Friday, March 20

John Porter and I have been invited to participate in the FDA-NIH dystrophin methodology meeting on Friday, March 20. While we said yes, we realize this is a difficult and painful topic for all of us. Dystrophin feels like the brass…

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Added by Pat Furlong on March 18, 2015 at 9:30am — No Comments


Staff
Are your members on?

Have your members of Congress signed onto the Duchenne funding letter yet?

Please review the list of Senate and House members who have signed onto the Duchenne funding letter being…

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Added by Ryan Fischer on March 17, 2015 at 2:44pm — 1 Comment


Staff
Update from the PAAC: “We’re all hooked into one world now!”

On January 15 of this year we introduced you to an incredibly special group of people, PPMD’s Adult Advisory Committee. The PPMD Adult Advisory Council (PAAC) serves to ensure that the…

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Added by Annie Kennedy on March 16, 2015 at 11:00pm — No Comments


Staff
Dollars Destroying Duchenne

PPMD loves creative, out-of-the-box fundraisers that raise awareness. This new, annual event from Davenport, FL is a great example of something you can do in your community. Read organizer Diana Rodriguez’s story and don’t hesitate to reach out to me with your own ideas. PPMD has all the tools you need to create a truly memorable and important event!…

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Added by Danielle Garrigan on March 16, 2015 at 8:34pm — No Comments

Thoughts on Being a Part of PPMD and the PAAC

There is a certain sense of solidarity we derive from those moments in which we share in the suffering of others. In sharing in the suffering of…

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Added by Benjamin F. Cumbo on March 16, 2015 at 11:42am — No Comments


Staff
Spring Forward: Bringing the MD-CARE Act to Life

Despite great odds in a political climate that was stacked against us – we achieved what was considered to have been impossible. After months of outreach to congressional champions and visits to Capitol Hill, the…

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Added by Annie Kennedy on March 15, 2015 at 12:04pm — No Comments

Awakening From The Dream

I close my eyes and the Dream begins…

In my Dream it is morning and I am lying in bed under the covers. I look at the clock and realize that I overslept and am going to be late for school! But there is no nurse there to help. So I try to lift up my hand and for the first time in over a decade it moves and I yank the covers off of me. Now what? I…

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Added by Anthony DeVergillo on March 14, 2015 at 10:30am — 2 Comments


Staff
What is Epicatechin?

Epicatechin is a flavonoid found in dark chocolate harvested from the cacao tree. What’s that got to do with Duchenne? Epicatechin is one of dozens of flavonoids found in dark chocolate, but it is unique with respect to its effects on muscle and heart. Epicatechin has been demonstrated in animals and…

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Added by PPMD on March 13, 2015 at 4:00pm — 3 Comments

How I joined the PAAC!

I thought a lot about what I would write in my first blog, and I realized I could go on and on with my feelings about Muscular Dystrophy and its impact on my life and my family and friends.... I won't be able to put down all my thoughts in one blog, but I guess the good thing is that I have lots to write about.



A few months back I was searching on the internet for any new research or information on Duchenne/Beckers. I have tried to keep an eye on the goings on in the 'community',… Continue

Added by Kanch Randhawa on March 12, 2015 at 5:00pm — No Comments


Staff
Recall Notice for Deflazacort 30mg (UPDATED 12/14/15)

[NOTE: This blog has been updated as recently as December 14, 2015. Please see the 'UPDATE 12/14/15' section below for more information.]



UPDATE - 12/14/15: 

There has been new information regarding the March 2015 recall of Deflazacort batches JL21 and JL28. It seems that these batches were…

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Added by Kathi Kinnett on March 12, 2015 at 3:00pm — 4 Comments

Michael E. Stone -serving with fellow distinguished members on the PAAC

I would like to introduce my self with a brief history. I'm 64 and living with BMD. How I came to find out the correct diagnosis of Becker muscular dystrophy is quite interesting and hopefully informative. I hope that my story could help those who might be in a similar situation. There will be a tie in to the work that the newbie PAAC has begun working on.

In 2000 at age 50, I thought that it was a proper time to start an annual physical routine. I visited my internist and all…

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Added by michael stone on March 12, 2015 at 10:30am — No Comments

Experience at the PPMD Conference in DC

Going into the conference I was somewhat apprehensive. Most of the PAAC members met the night before at a restaurant across the street from the hotel. Once I saw the other members it put me at ease because I realized there were other people suffering from the same disease as me. I was interested to see how they had adapted to their own situation of DMD/BMD. The next day we began a long day of presentations. For me it was good to see other people coping with their disease just as I had been…

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Added by Matt Petrusko on March 11, 2015 at 7:33pm — No Comments

Flying to Fight Muscular Dystrophy

When I was honored with the opportunity of joining the first Parent Project Muscular Dystrophy Adult Advisory Council, my first thought was how am I going to make it down to DC?

When you haven’t walked in more than a decade, travel becomes the most inaccessible thing in the world. Traveling by car, bus, subway, or train is a piece of cake because we can do it from the comfort and safety of our wheelchairs. Planes however involve…

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Added by Alan Chaulet on March 9, 2015 at 8:41pm — No Comments

Getting to know you, getting to know all about you..

Years ago on PBS I used to watch a show called ZOOM.  This was a few years ago, so what was unique about the show was the online content. Kids were encouraged to send in emails to the cast about do-it-yourself science experiments, word games, magic tricks, and challenges.  This critical online component of the show was stressed in a line from the show’s theme song: “We’re all hooked into one world now!”  After the PAAC Leadership conference the week before last, I feel that “We’re all hooked…

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Added by Buddy Cassidy on March 8, 2015 at 8:48pm — No Comments

What PPMD Means to Me (The Only DMD/BMD Blog You’ll Read Today with a "Sex and the City" Reference)

At some point in our lives, sometimes sooner than others, we all have that one experience that makes us feel totally alone. Sure, most people with and without disabilities have been made fun of, bullied, or pushed around in their youth.  And it’s common to – at least once – be mad at the world because life isn’t fair. Even if you have a generally great childhood overall, as I am lucky to be able to say I did, there will be that first, singular moment that reminds you that sometimes, there…

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Added by Mario Damiani on March 7, 2015 at 9:30pm — No Comments

“2008 CS190: TRANSNEPTUNIAN OBJECT. ASTROLOGICAL RULER OF THE MUSCLE VARIABLE POWER”

Friends, I wrote an introductory text on the planetoid that among the ones I know, is the main astrological ruler of the muscles. Unfortunately I’m not having time to try to present to you a translation in the English language:

“2008 CS190, OBJETO TRANSNEPTUNIANO, REGENTE ASTROLÓGICO DE LA VARIABLE POTENCIA MUSCULAR”…

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Added by Antônio Carlos Costa Lima Vieira on March 5, 2015 at 1:32pm — No Comments


Staff
BioMarin Update on Duchenne Muscular Dystrophy program (March 2015)

United Parent Projects Muscular Dystrophy (UPPMD) requested an update from Biomarin seeking answers to specific questions around next steps in terms of re-dosing, NDA submission for drisapersen in the US, the development program for additional exons, and natural history study. Read the update…

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Added by PPMD on March 5, 2015 at 1:30pm — No Comments

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