Annie Kennedy's Blog (85)

21st Century Cures: A sign that the tide could be turning

If I were to tell you that it takes an average of 10 years and one billion dollars to yield a single new therapy – would you be surprised? Probably not, yet none of us has that luxury of time or money.



If I were to share that many of our nation’s leaders admit that our scientific and clinical institutions and the…

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Added by Annie Kennedy on November 24, 2014 at 11:30am — 1 Comment

Help us bring the ABLE Act to the Floor – it’s a game changer!

Great news... House and Senate Leadership continue to hear from the disability community that the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647) must pass this year!



The ABLE Act amends Section 529 of the U.S. Tax Code that allows families to save for the future of their child with a…

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Added by Annie Kennedy on November 21, 2014 at 9:00am — No Comments

Calling All Adults with Duchenne/Becker – This Means YOU!

Ever wished you could change the world – or at least your piece of it? Been looking for a way to engage a bit more? Have personal experience that you’d like to see be better reflected in policy and program efforts?

PPMD is seeking Adult members of our Duchenne/Becker community to serve on the newly-forming PPMD Adult Advisory Council…

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Added by Annie Kennedy on October 6, 2014 at 10:14am — No Comments

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…

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Added by Annie Kennedy on September 22, 2014 at 11:30am — 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 began…

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

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