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…Continue
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…Continue
Added by Annie Kennedy on November 21, 2014 at 9:00am — No Comments
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…Continue
Added by Annie Kennedy on October 6, 2014 at 10:14am — No Comments
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…Continue
Added by Annie Kennedy on September 22, 2014 at 11:30am — No Comments
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…Continue