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All Blog Posts Tagged 'Staff' (750)


Staff
Your DuchenneConnect Registry Data is Advancing Research! New Publication

Do you ever wonder what happens to all the data we collect in the DuchenneConnect Registry? Ever wonder why we regularly ask you to update your registry account?

How your data is…

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Added by Ann Martin on October 16, 2017 at 10:29am — No Comments


Staff
Gene Transfer in the Spotlight

On September 28 and 29, I had the privilege of attending an in-person Wellstone Center meeting that Dr. Eric Olson and his Wellstone team at UT Southwestern Medical Center hosted in Dallas, TX. The breadth and depth of what the Wellstone Centers have worked on over the years…

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Added by Abby Bronson on October 11, 2017 at 12:30pm — 1 Comment


Staff
News from 2017 World Muscle Society: Part 2

Annie Kennedy and Kathi Kinnett from the PPMD team recently attended the 22nd International Annual Congress of the World Muscle…

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Added by PPMD on October 9, 2017 at 12:30pm — No Comments


Staff
83 International Experts Submit Letter to FDA Encouraging Approval of Ataluren

PPMD applauds the group of 83 international experts with experience caring for Duchenne patients around the globe who have written a letter to the FDA encouraging approval of…

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Added by PPMD on October 9, 2017 at 10:36am — No Comments


Staff
News from 2017 World Muscle Society: Part 1

 

Annie Kennedy and Kathi Kinnett from the PPMD team are attending the 22nd International Annual Congress of the World Muscle Society…

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Added by PPMD on October 6, 2017 at 1:30pm — No Comments


Staff
Steroid Dosing & Duchenne: FAQs

Steroid dosing in Duchenne can be a confusing topic – what is enough, what is too much, why weekend doses are higher. With these frequently asked questions I’ve heard from the community…

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Added by Kathi Kinnett on October 5, 2017 at 3:00pm — No Comments


Staff
2017 World Muscle Society: Highlighting Progress in Duchenne

“WMS - What’s the buzz?”

 

It has been many years since I’ve had the opportunity to attend the World Muscle Society meeting and wow how things have changed! While PPMD has strong representation here every year, this year I have…

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Added by Annie Kennedy on October 4, 2017 at 1:00pm — No Comments


Staff
Catabasis Reports Positive Results from Open-Label Extension of MoveDMD Trial with Edasalonexent

Catabasis Pharmaceuticals, Inc. today reported new positive efficacy results following 24 and 36 weeks of treatment with 100 mg/kg/day oral edasalonexent in…

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Added by PPMD on October 4, 2017 at 10:30am — 1 Comment


Staff
Letter from PTC Therapeutics to the Community Following FDA Ad Comm

PTC Therapeutics President and CEO, Stuart Peltz, Ph.D has shared a letter with the Duchenne community following last week's…

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Added by PPMD on October 3, 2017 at 9:30am — No Comments


Staff
Webinar Q&A: Gene Therapy Part 2 – Nationwide Children's Hospital

This fall, PPMD is presenting a gene therapy webinar series with companies and institutions who are developing therapies for Duchenne that are commonly referred to as gene therapy, including…

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Added by Abby Bronson on October 2, 2017 at 1:30pm — No Comments


Staff
You can still join the fight to end Duchenne!



As we head into the 10th Annual Coach To Cure MD weekend tomorrow, with emotions still running high from yesterday’s…

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Added by Pat Furlong on September 29, 2017 at 10:06am — No Comments


Staff
Coming Full Circle: The Ataluren Ad Comm

Like any of you who participated in today’s Advisory Committee Meeting at the FDA for PTC Therapeutic’s ataluren, I am emotionally exhausted. Whether you participated by speaking during the Open Public Hearing, attending the Ad Comm on the FDA campus, submitting your written testimony, or…

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Added by Pat Furlong on September 28, 2017 at 5:30pm — No Comments


Staff
September 28: FDA Advisory Committee Meeting for Ataluren - Live Webcast Information

On Thursday, September 28, an FDA Advisory Committee will review ataluren for potential approval and use within our Duchenne community.…

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Added by PPMD on September 27, 2017 at 6:42pm — No Comments


Staff
PPMD Continues Grant Supporting Clinic Liaisons for Certified Duchenne Care Center Program

PPMD is excited to announce that we will continue a grant program to help support our Certified Duchenne Care…

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Added by PPMD on September 27, 2017 at 12:30pm — No Comments


Staff
Are You Ready for Coach To Cure MD This Saturday?

This weekend, nearly every televised College Football game around the country will have coaches wearing Coach To Cure MD…

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Added by PPMD on September 26, 2017 at 1:00pm — No Comments


Staff
Briefing Documents for Ataluren Ad Comm Released

The briefing documents for the …

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Added by PPMD on September 26, 2017 at 9:30am — No Comments


Staff
In an Emergency – Consider a Medical ID

Let’s say that Joe has Duchenne. If Joe breaks his arm and the EMT comes before Joe’s parent arrives, Joe may not remember to tell the EMT that: 1) he has Duchenne, 2) he is on daily steroids 3) he is allergic to penicillin and, in that painful scary moment, he may or may not remember his parent’s…

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Added by Kathi Kinnett on September 22, 2017 at 7:23pm — No Comments


Staff
PPMD Research Update: September 2017

As you know by now, September is Duchenne Action Month. And…

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Added by Abby Bronson on September 21, 2017 at 12:00pm — No Comments


Staff
ACTION ALERT: Stop the Graham-Cassidy proposal in the Senate

The Senate is considering another effort to repeal the Affordable Care Act (ACA) before the end of the month. Last week, Senators Lindsey Graham (R-SC), Bill Cassidy (R-LA), Dean Heller (R-NV), and Ron Johnson (R-WI) released a new plan to repeal and replace the ACA. This proposal is commonly referred to as…

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Added by Annie Kennedy on September 19, 2017 at 10:00am — No Comments


Staff
2017/2018 Flu Vaccination Recommendations

Everyone, six months of age and older, needs to be vaccinated against influenza (flu) by the end of October, if possible. Protecting people living with Duchenne is especially important. A …

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Added by Kathi Kinnett on September 18, 2017 at 10:30am — No Comments

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