September 2014 Blog Posts (13)

President Signs MD-CARE Act Amendments Into Law

Capping a two-year advocacy campaign led by Parent Project Muscular Dystrophy (PPMD), today President Barack Obama signed the MD-CARE Act Amendments of 2014 into law, providing a significant victory to…


Added by PPMD on September 26, 2014 at 4:30pm — No Comments

Rebekah Cupcakesx Sands, Braveheart

Somewhere over the rainbow

Bluebirds fly

And the dreams that you dare to dream

Really do come true

Somewhere Over The Rainbow" – lyrics by E.Y. Harburg…


Added by Pat Furlong on September 25, 2014 at 10:04am — No Comments

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 past. 

I remember a conversation with Joel Wood, President…


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

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 between the age of 4 and 8 – and then a rapid deterioration of…


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

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…


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

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 Parent Project Muscular Dystrophy…


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

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…


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

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 Security Income (SSI), can help ease the financial stresses of…


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

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). Sadly, Jason has passed, but Susie continues to thrive. …


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

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 information so that you can be aware of the symptoms caused by this…


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

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 there was a higher power at work. When I spoke to Pat the first time…


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

‘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.


Since my personal affiliation…


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

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…


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

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