PPMD Community

May 2016 Blog Posts (10)


Staff
PPMD’s #EverySingleOne Tour: Salt Lake City

With a successful ESO tour stop in Baltimore under our belts, PPMD visited Salt Lake City this past weekend! There’s a special sense of…

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Added by Kathi Kinnett on May 26, 2016 at 3:00pm — No Comments


PAAC
Buddy's Elegy for Ben Cumbo

Buddy’s Elegy for Ben

 

Every day of my life, I think of you,

And when I blow my horn, I think of you.

If I could say how much you meant to me,

I have no words to express my love for you.

Your music plays inside my head,

In every song I ever wrote,

This is part of me, I send to you,

It’s coming from my heart,

And every day I think of you.

Right from the sky, I feel your…

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Added by Buddy Cassidy on May 25, 2016 at 1:55pm — No Comments


PAAC
Can I get a taxi? Can I get a witness?

Can I get a taxi? Can I get a witness?

 

When you’re disabled, your transportation options aren’t great. In this piece, I don’t have any real solutions to the problems I bring up, but I’d like to at least start a conversation. And who knows, maybe someone out there might have some advice for me. Okay, so I’ll go through the various scenarios and the problems that each presents.

 

I drive

I use the strikethrough to indicate this…

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Added by Buddy Cassidy on May 25, 2016 at 1:21pm — No Comments


Staff
Sarepta Announces FDA Will Not Complete the Review of the Eteplirsen NDA By The PDUFA Date

The FDA has notified Sarepta that they are continuing their review of eteplirsen and will not be able to complete…

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Added by PPMD on May 25, 2016 at 12:00pm — No Comments


Staff
PPMD Names Children’s Mercy Hospital in Kansas City, MO, Certified Duchenne Care Center

PPMD Awards Eleventh Clinic Certification as Part of Effort to Ensure People with Duchenne Receive Optimal Care

 

Children’s Mercy Hospital (Children’s…

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Added by PPMD on May 16, 2016 at 2:08pm — No Comments


Staff
DRSC Definitions

A couple of months ago we posted a write up about some of the efforts PPMD is undertaking to help improve…

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Added by Abby Bronson on May 16, 2016 at 8:40am — 2 Comments


Staff
Next Steps with Newborn Screening

For more than two years, PPMD has been leading a national effort to build a newborn screening infrastructure for Duchenne in the U.S.

Led by PPMD's Annie Kennedy, Michele Lloyd–Puryear, M.D., Ph.D., Newborn Screening Consultant for PPMD, and Jerry Mendell, MD of Nationwide Children's, the…

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Added by PPMD on May 16, 2016 at 8:30am — No Comments


Staff
PPMD Brings Together Experts to Assess Steroid Effects on Bone Health in Duchenne

Bone health has long been a confusing and often neglected aspect of Duchenne care. There is very…

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Added by Kathi Kinnett on May 12, 2016 at 9:00am — No Comments


Staff
Every single carrier.

I am a genetic carrier of Duchenne. My mother was not. This means I was one of the 1:4600 females born with this genetic mutation. As a child, I had muscle cramps, ‘growing pains’ my parents would say. And from those ‘growing pains,’ 20 years later, my sons were diagnosed and I first learned…

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Added by Pat Furlong on May 9, 2016 at 10:07am — 4 Comments


Staff
Update from April 2016 Muscular Dystrophy Coordinating Committee (MDCC) Meeting

It's been a rough few weeks for this community, but our efforts to shape and reshape access barrier issues for our community continue -- and last Wednesday we took a giant leap forward. It was a pivotal day that I was proud to be a part of!



The federal intra-agency…

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Added by Annie Kennedy on May 3, 2016 at 10:28am — 1 Comment

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