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All Blog Posts Tagged 'Staff' (419)


Staff
BioCentury Cover Story: What industry, FDA must do to realize the potential of patient engagement

"Making patients true partners thus would help create better medicines and reduce skepticism about regulators and the animus that has destroyed public trust of the pharmaceutical industry."

A great cover story from BioCentury yesterday talks about changes both industry sponsors and the FDA…

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Added by PPMD on February 24, 2015 at 10:30am — No Comments


Staff
PPMD Leads Duchenne Advocates to Capitol Hill to Accelerate Therapies and Quality Care

PPMD's Annual Advocacy Conference Focused on Implementing MD-CARE Act Amendments & Strengthening Patient Voice at FDA

Just months after helping achieve enactment of amendments to the landmark …

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Added by PPMD on February 23, 2015 at 10:30am — 2 Comments


Staff
PPMD Launches State Captain Advocacy Program

Our incredible community is fighting the war on Duchenne on many fronts. These fronts include funding early science and breakthrough translational research, demanding optimal care for all those diagnosed with Duchenne –and changing public policy. Much of those gains on the battlefield have…

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Added by Ryan Fischer on February 19, 2015 at 10:00am — No Comments


Staff
PPMD Awards University of Missouri $50,000 Exploratory Grant to Explore SERCA2A in Duchenne Dog Study

PPMD has awarded a $50,000 Exploratory Grant to University of Missouri to test SERCA2A gene therapy as a potential treatment for dogs with Duchenne. Dr. Dongsheng Duan, a longtime researcher in Duchenne and a member of PPMD’s Scientific Advisory Committee,…

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Added by PPMD on February 16, 2015 at 11:00am — No Comments


Staff
Your Action Plan for the Muscular Dystrophies

During my time at the National Institutes of Health (NIH) one of my key roles was serving as Executive Secretary for the Muscular Dystrophy Coordinating Committee (the MDCC). To help coordinate activities across the NIH and with activities of other Federal health agencies,…

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Added by John D. Porter, PhD on February 12, 2015 at 12:00pm — 6 Comments


Staff
PPMD Names University of Iowa Children’s Hospital a Certified Duchenne Care Center

Today Parent Project Muscular Dystrophy (PPMD) named The University of Iowa Children’s Hospital (UI Children’s Hospital) our seventh Certified Duchenne Care Center, recognizing the Hospital’s dedication to improving care for people living with…

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Added by PPMD on February 6, 2015 at 1:30pm — No Comments


Staff
Parent Project Muscular Dystrophy Awards UCLA $50,000 Exploratory Grant for Evaluation of Exon Skipping Enhancers in Duchenne

PPMD announced today that they will award Dr. M. Carrie Miceli and her team at UCLA’s David Geffen School of Medicine and College of Letters and Science, a $50,000 exploratory grant to continue their evaluation of exon skipping boosters for the treatment of Duchenne. 

 

Duchenne muscular…

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Added by PPMD on January 29, 2015 at 1:00pm — 2 Comments


Staff
Get Active in Advocacy

2014 was a historic year in our community. 2015 promises to be another critical year in Duchenne and we need you to help keep the momentum going! Just look at the ‘to-do’ list:



  • MD-Care Act amendment implementation begins
  • New Drug Applications submissions expected by several companies
  • The FDA has stated publicly…
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Added by Ryan Fischer on January 28, 2015 at 1:30pm — No Comments

FDA Acknowledges the Importance of Benefit-Risk Preferences: Why this Matters to Duchenne

This started as a blog about the second publication on PPMD’s benefit/risk study, which was published in late December in a journal called The Patient (and more on that later). But something remarkable happened this week that helps frame…

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Added by Holly Peay on January 26, 2015 at 10:23am — No Comments


Staff
Important Vaccinations Recommendations

Vaccinations are very, very important to protect us against infection and disease – but they are also very, very confusing. 

Some vaccines are “live,” some are “attenuated (killed),” some protect against…

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Added by Kathi Kinnett on January 23, 2015 at 12:00pm — No Comments


Staff
BMS & The Voice of the Patient

For the last two years, global biopharmaceutical company Bristol-Myers Squibb (BMS) has organized a day when all of their drug development project teams from across the world would have the opportunity to take some time to…

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Added by Pat Furlong on January 22, 2015 at 10:30am — 1 Comment


Staff
Meet our 2015 PPMD Adult Advisory Council!

“We were the generation that was hoped for… And now we’re here.” L. Vance Taylor

The PPMD Adult Advisory Council (PAAC) serves to ensure that the voices of adults living with Duchenne and Becker…

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Added by Annie Kennedy on January 15, 2015 at 1:00pm — No Comments


Staff
PPMD Welcomes New CEO, John Porter, PhD

We're excited to announce that John Porter, PhD, former program director of the National Institutes of Health (NIH)/National Institute of Neurological Disorders and Stroke (NINDS) will take on the role of Chief Executive Officer for Parent Project Muscular…

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Added by PPMD on January 12, 2015 at 9:00am — No Comments

Without Endings There Are No Beginnings…

It’s New Year’s Day 2015 and I think Janus, the two-headed Roman God who looks forward and backwards at the same time, is a fitting representation of my life right now. I need to tell you all that I have had to make a difficult decision this year—at the end of this month I will…

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Added by Sharon Hesterlee on January 5, 2015 at 1:30pm — 1 Comment


Staff
Nearly there!

We’re so close. Thanks to the strength and generosity of this incredible community, we are only $36,200 from our goal of $400,000 to fund combination therapies. There’s still time for you to help us reach our goal.…

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Added by Pat Furlong on December 31, 2014 at 8:51am — No Comments


Staff
Heart Failure Drugs Slow Deadly Damage in Duchenne, Offering New Hope

In a new study led by Dr. Subha Raman of The Ohio State University Wexner Medical Center, researchers were able to dramatically slow the rate of heart damage in patients with Duchenne muscular dystrophy by using a combination of well-established drugs.…

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Added by Kathi Kinnett on December 29, 2014 at 7:00pm — 1 Comment

Now is the time for strength.

We’ve been working toward this moment for years. And the time for action is now.



When I started with PPMD in 2009, Pat Furlong and I talked a lot about what it would take to end Duchenne. We knew it wouldn’t be one thing, and we knew it wouldn’t be easy. We believed that only a combination of therapies could address the entire disease within the body.…



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Added by Sharon Hesterlee on December 18, 2014 at 3:02pm — No Comments


Staff
The Solid Suit: Combining Forces to Enhance Strength

(Pictured from left to right: Stanley Nelson, MD, Center for Duchenne Muscular Dystrophy at UCLA, Thomas Sugar, PhD, Arizona State University Polytechnic School, Tom Egan, SRI International, Roy…

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Added by Annie Kennedy on December 18, 2014 at 9:57am — 1 Comment


Staff
Pfizer Initiates Phase 2 Study of PF-06252616 in Duchenne Muscular Dystrophy

Pfizer Inc. announced today enrollment of the first patient in a multicenter Phase II clinical trial of the investigational compound PF-06252616 in boys with Duchenne muscular dystrophy (DMD), a genetic disorder characterized by progressive muscle degeneration and weakness. PF-06252616 is an experimental, infused,…

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Added by PPMD on December 17, 2014 at 9:00am — No Comments

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