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All Blog Posts Tagged 'Staff' (362)


Staff
‘Operation Duchenne’: Proud to Be Serving In The Trenches With You

Each member of our Duchenne community has a personal reason for being here. Much like soldiers in an army, some of us have been drafted while others have us have enlisted – but we are all fighting together, battle after battle - within the same trenches.…

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Added by Annie Kennedy on September 9, 2014 at 12:00pm — 1 Comment


Staff
Action Alert: Tell the Senate to take action on MD-CARE Act!



Congress has returned from their Summer recess and it is time to re-engage them on the MD-CARE Act Amendments. We need each member of our community to reach out to your Senators and urge them to tell leadership to bring the…

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Added by Ryan Fischer on September 9, 2014 at 10:35am — No Comments


Staff
Let’s improve DuchenneConnect’s informed consent. Give your opinion by September 7th.

You may be thinking, “An informed consent document? No way do I want to read one of those!” But you can demonstrate the power of our community and help us write a more understandable, responsible informed consent for our community’s registry.



As many of you know,…

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Added by Holly Peay on August 28, 2014 at 11:25am — No Comments


Staff
Run Big Sur or Star Wars to End Duchenne!



Two NEW and exciting races have been added to our Run For Our Sons calendar for 2015....which adventure will you…

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Added by Nicole Herring on August 19, 2014 at 1:30pm — No Comments


Staff
PPMD Submits Cardiac Recommendations to FDA

As you know, PPMD recently facilitated a multi-stakeholder process involving patients, parents, investigators, industry, and other interested parties which culminated in a draft guidance document…

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Added by Pat Furlong on August 18, 2014 at 1:00pm — No Comments


Staff
MD-CARE Act: We are not done yet! Tell the Senate to act this September.

Sure, we’re in the lazy days of summer and Congress is on recess, but now is not the time to slow down on the MD-CARE Act. Let’s keep our momentum going. Take a minute to thank the House for passing the…

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Added by Ryan Fischer on August 13, 2014 at 9:30am — No Comments


Staff
The Breath of Life: New 3-Part Pulmonary Webinar Series

The lungs require the strength of many muscles to help a person to breathe and cough. As people with Duchenne grow older, the respiratory muscles, like the skeletal muscles, become weaker.…

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Added by Kathi Kinnett on August 12, 2014 at 9:30am — No Comments


Staff
Duchenne in Paradise

Every year I try to escape the real world for a couple of days and retreat with my family to probably my favorite place on Earth – Dowagiac. I’ve reminisced before, but this place is magical to me. It is my childhood, it is summer, it is magic. With so much going on in our community –…

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Added by Pat Furlong on August 7, 2014 at 10:30am — 1 Comment


Staff
Welcoming Drs. Dongsheng Duan & Jill Rafael-Fortney to PPMD's Scientific Advisory Committee

We are excited to welcome the two newest members of our Scientific Advisory Committee, Dongsheng Duan, PhD and Jill Rafael-Fortney, PhD! Our Scientific Advisory Committee, chaired by PPMD Senior Scientific Advisor Dr. Lee Sweeney, includes leading experts in basic and clinical Duchenne research and Duchenne clinical management. The committee expertly reviews every grant that comes in and offers funding or advice on…

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Added by PPMD on August 6, 2014 at 11:30am — No Comments


Staff
Remembering Scott – In his own words

I had no words for Scott’s death. In fact, he had been actively dying for several years. I had hoped that he might see Rebekah for one last time, though I realized they were both too sick and living in different countries made it impossible. The good news is that many people with Duchenne never find…

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Added by Pat Furlong on August 4, 2014 at 10:30am — No Comments


Staff
Exon-Skipping Trial Updates from Sarepta & Prosensa



In the wake of promising exon-skipping trial announcements earlier this summer, PPMD has been fielding many questions from the community about upcoming trials. We reached out to both Sarepta and Prosensa for updates to share.…

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Added by PPMD on July 31, 2014 at 3:00pm — No Comments


Staff
Cincinnati Children’s Named Certified Duchenne Care Center By Parent Project Muscular Dystrophy

Cincinnati Children’s Hospital Medical Center has been named the third Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD).

 

PPMD established certified…

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Added by PPMD on July 29, 2014 at 11:30am — No Comments


Staff
Navigating the Landscape of Compassionate Use

Requests for compassionate use of investigational drugs have increased dramatically in recent years.

In a newly released white paper by Siren Interactive, produced from input…

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Added by PPMD on July 23, 2014 at 9:13am — No Comments


Staff
No Exon Left Behind

I'm often asked by parents to explain exon skipping. In fact, at last month's 20th Annual Connect Conference, after we announced a grant awarded to Dr. Judith van…

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Added by Sharon Hesterlee on July 21, 2014 at 10:15am — 6 Comments


Staff
NIH Awards $6.3 Million Grant to Seattle Muscular Dystrophy Researchers



A group of Seattle-based muscular dystrophy researchers has been awarded a prestigious $6.3 million grant from the National Institute of Health (NIH) to establish a Senator Paul D. Wellstone Cooperative Research CenterCongratulations to Dr. Chamberlain and…

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Added by Ryan Fischer on July 18, 2014 at 11:28am — No Comments


Staff
Action Alert! Key Senate Committee Schedules Markup for MD-CARE Act

Please take 1 minute to email your Senators!

 

Yesterday, a key Senate committee announced that it will …

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Added by Ryan Fischer on July 17, 2014 at 12:30pm — No Comments


Staff
PPMD President Participates on Patient Reported Outcomes Panel to Inform FDA Public Meeting

Today, PPMD President Pat Furlong has the distinct honor of participating on a panel at the Engelberg Center for Health Care Reform at Brookings.



The topic will be: Enhancing the development of and…

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Added by PPMD on July 16, 2014 at 9:30am — No Comments


Staff
Duchenne Cardiac Working Group Recap

Care of the heart in Duchenne is not a simple business. As a community, we realize:  



  • Prescriptions for cardiac care and surveillance differ widely between both practices and providers.
  • Large gaps exist in cardiac research.
  • While future goals are necessary, we…
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Added by Kathi Kinnett on July 15, 2014 at 2:30pm — No Comments


Staff
PPMD and NHLBI Co-Sponsor Duchenne Cardiac Working Group

Parent Project Muscular Dystrophy (PPMD) has partnered with the National Heart, Lung, and Blood Institute (NHLBI) to convene a working group titled “Contemporary Cardiac Issues in Duchenne Muscular Dystrophy.” The group, made up of top pediatric and…

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Added by PPMD on July 9, 2014 at 10:02am — 3 Comments


Staff
Outcomes Meeting: Laying a Foundation for Outcome Measures

A 6 minute walk test is a 6 minute walk test, right?

Well, maybe not.



It turns out, there can be many variations of the same test. For example, is it done on carpet? On linoleum? On concrete? Shoes on? Shoes off? Socks on? Socks off? Do you start when the therapist…

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Added by Kathi Kinnett on July 8, 2014 at 11:30am — No Comments

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