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 began…Continue