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All Blog Posts Tagged 'Staff' (402)


Staff
PPMD's 2015 Connect Conference: Register for the National Duchenne Rally & Hill Day by June 1

With this year's Annual Connect Conference in Washington, DC, PPMD wanted to take advantage of being in our Nation's Capital and ensure that our Duchenne community leaves an indelible imprint…

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Added by PPMD on May 19, 2015 at 12:30pm — No Comments


Staff
PPMD’s Connect Series: Bringing Together You & the Experts

For 21 years, PPMD has been connecting the Duchenne community with experts in the field focused on research, advocacy, and care. Our largest gathering is, of course, PPMD’s Annual Connect…

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Added by PPMD on May 12, 2015 at 11:00am — No Comments


Staff
Saying Goodbye to Matt Petrusko, PAAC Member

Last night, another beautiful spirit in the Duchenne community left this world much too early. Matt Petrusko was a 34-year-old from Rahway, New Jersey and a proud member of PPMD’s…

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Added by Pat Furlong on May 11, 2015 at 4:01pm — 1 Comment


Staff
2015 Newly Updated Vaccination Recommendations

As you know, PPMD works very hard to keep you as up to date as possible. Sometimes those updates come very quickly, as has recently happened with recommendations for vaccinations. While we just recently published a new “altered vaccination schedule,” discussions with the Centers for Disease Control and…

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Added by Kathi Kinnett on May 7, 2015 at 1:30pm — No Comments


Staff
PPMD's 2015 Connect Conference Agenda: Now Available!

PPMD is excited to share with you the agenda for the 21st Annual Connect Conference in Washington, D.C., June 18-21 at the Washington Marriott Wardman Park. Every year our agenda grows and…

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Added by PPMD on May 4, 2015 at 5:00pm — No Comments


Staff
The “Let’s Get Them Moving” Workshop

On Monday, PPMD’s Founding President Pat Furlong, CEO Dr. John Porter, and SVP of Legislation & Public Policy Annie Kennedy joined Duchenne stakeholders from around the world in a special one-day meeting to discuss robotic technology and the potential it holds for our community. PPMD – together with UPPMD – gathered the best and brightest robotics experts and engineers who are working to apply their innovations to Duchenne. We discussed the variety of technologies currently in…

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Added by PPMD on April 29, 2015 at 10:00am — 1 Comment


Staff
Let's Get Them Moving Workshop: Our First Steps Toward That Goal

Yesterday, Parent Project Muscular Dystrophy and Duchenne Parent Project-Netherlands (DPP) co-hosted the first ever conference on assistive technology for Duchenne muscular dystrophy. There were twenty-five participants in the workshop, from six countries, representing academia (both researchers and engineers), companies, clinical practice, and patient advocacy. PPMD was represented by Pat Furlong, Annie Kennedy, and myself. Elizabeth Vroom (DPP-Netherlands) set the tone for the meeting…

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Added by John D. Porter, PhD on April 28, 2015 at 10:00am — No Comments


Staff
A Light Goes Out – Goodbye to Ben Cumbo, PAAC Member

Ben Cumbo died last night. While Heaven is brighter today, our world has lost a great light.



I first met Ben in 2001. We testified about the importance of the MD-CARE Act. He was very young then, but his wisdom apparent. He talked about the cost of a Stealth bomber, on average $737 million…

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Added by Pat Furlong on April 22, 2015 at 3:30pm — 4 Comments


Staff
Santhera Releases Positive Data from Phase III Clinical Trial of Idebenone (Raxone®/Catena®) in Duchenne

Today, Santhera has published the results in the highly prestigious journal, The Lancet, from their successful clinical trial of Raxone®/Catena® . They will present these results later this week, at the annual meeting of the American Academy of Neurology. First, idebenone was safe and well tolerated. Importantly, treatment of study…

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Added by John D. Porter, PhD on April 21, 2015 at 10:00am — No Comments


Staff
Parent Project Muscular Dystrophy Awards $148,000 Grant to University of Washington

Parent Project Muscular Dystrophy (PPMD) has awarded University of Washington a $148,000 grant to continue the functional analysis of spectrin-like repeats in dystrophin. Led by Stanley C. Froehner, PhD, Sackler professor and chair of the Department of Physiology & Biophysics at University of Washington, this grant will provide funding so that more research can be completed before the team submits to the National Institutes of Health (NIH) for additional…

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Added by PPMD on April 20, 2015 at 11:00am — No Comments


Staff
BioMarin Update

BioMarin has provided the following update on redosing of drisapersen for a new clinical trial. Ambulation will not be an inclusion or exclusion criterion for enrollment, but boys will need to have been previously dosed as part of a clinical trial.…



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Added by Ryan Fischer on April 14, 2015 at 9:00am — No Comments


Staff
Sarepta Update

Earlier this month Sarepta announced a change in leadership, with CMO Ed Kaye taking over as interim CEO.



Following that announcement the team at Sarepta organized a call…

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Added by Ryan Fischer on April 13, 2015 at 11:00am — No Comments


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

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