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…


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…


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…


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…


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…


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

Need help using this community site? Visit Ning's Help Page.



© 2022   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service