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All Blog Posts Tagged 'Staff' (331)


Staff
The MD-CARE Act: Reflections & Projections

With the passage of the Amendments to the MD-CARE Act last week, there is unprecedented momentum for Duchenne at the federal level. And with this major victory, words and phrases echo from the…

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Added by Pat Furlong on September 23, 2014 at 12:30pm — 1 Comment


Staff
ALD. Ever heard of it?

No, not the ‘Ice bucket thing’. That’s ALS. This is Adrenoleukodystrophy (ALD). It is an X-linked recessive disorder that affects an estimated 1 in every 18,000 live births. It is primarily a childhood disorder where boys are born appearing completely healthy until symptom unset sometime…

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Added by Annie Kennedy on September 22, 2014 at 11:30am — No Comments


Staff
MD-CARE Act Passed!

Duchenne Community Knows No Bounds

Today – September 18, 2014, our Duchenne community once again made history by demonstrating that nothing could stop us from ensuring that the life-saving research momentum of our landmark bill would be expanded to reflect the current needs of our…

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Added by Pat Furlong on September 18, 2014 at 10:13pm — 2 Comments


Staff
Parent Project Muscular Dystrophy Names Seattle Children's Hospital Certified Duchenne Care Center

Fourth Clinic to Receive Certification

Seattle Children's Hospital was named a Certified Duchenne Care Center by …

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Added by PPMD on September 17, 2014 at 3:59pm — No Comments


Staff
Congressional 21st Century Cures Initiative: PPMD Ensuring our Duchenne Community’s Place At the Table

PPMD is continuously seeking innovative opportunities to impact the process of developing therapies for Duchenne. Opportunity comes in many forms - funding promising research, advancing care standards for all patients, and advocating for key changes in federal policy.

 

Earlier this year Congress launched the 21st Century Cures Initiative, a comprehensive look at what can be done to accelerate the pace of cures in American therapeutic…

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Added by Ryan Fischer on September 15, 2014 at 12:00pm — No Comments


Staff
Social Security Disability Help

If you have a child with Duchenne or Becker muscular dystrophy, you may be eligible to receive funds from the government to help with the burden of expenses brought on by day to day life with muscular dystrophy. Social Security Disability benefits, in the form of Supplemental…

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Added by Brian Denger on September 15, 2014 at 11:30am — No Comments


Staff
Susie’s Story

In 2013, we brought you the story of Jason and Susie, two courageous patients who had undergone implantation of left ventricular assist devices (LVADs).…

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Added by Kathi Kinnett on September 15, 2014 at 10:54am — No Comments


Staff
It's Flu Season Again!

Note: Several of you have also asked about the enterovirus, a mild to severe respiratory illness going around now. The CDC has provided helpful…

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Added by Kathi Kinnett on September 15, 2014 at 10:30am — No Comments


Staff
We Got Annie

Timing is everything. When I think back on how I found Pat, Kimberly, and PPMD ten years ago to the month, I often think about the events that led to that faithful interview in the fall of September 2004. Sure, maybe some of it was luck, but I also believe…

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Added by Ryan Fischer on September 10, 2014 at 4:00pm — No Comments


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

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