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All Blog Posts Tagged 'Staff' (430)


Staff
Orthopedic Complications in Duchenne (Webinar Summary & Recording)

"What is heel cord lengthening?"

"What are AFO's?" 

"How do I know if I am correctly doing stretches with my child?"

"What should I know about scoliosis surgery?"

"My child hates "night boots" – are they really that important?"

These and so many other questions are…

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Added by Kathi Kinnett on April 3, 2015 at 12:00pm — No Comments


Staff
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
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


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


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


Staff
Recall Notice for Deflazacort 30mg

[NOTE: This blog has been updated. Please see below for more information.]

PPMD has been in touch with Masters Pharmaceuticals regarding a recall that was sent…

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


Staff
We Need YOU to Help Us With the Development of the Solid Suit

In December, we announced the launch of an exciting collaboration between PPMD, Solid Ventures, and SRI International to develop the…

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Added by Annie Kennedy on March 2, 2015 at 2:30pm — 1 Comment


Staff
Important New Duchenne Steroid Protocol: Download the "PJ Nicholoff Steroid Protocol"

Phillip James “PJ” Nicholoff was a vibrant, 31-year-old man living with Duchenne muscular dystrophy. He had an encyclopedic love of all college and professional sports; he and his family traveled all over the country to catch games. He had a degree in web design and worked his entire adult…

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Added by Kathi Kinnett on March 2, 2015 at 10:30am — 3 Comments


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

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