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Old 12-18-2019, 05:35 PM   #17
Oil Stain
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Originally Posted by looooob View Post
Obviously particularly devastating to this family given the familial nature


on the other hand as a single gene form of ALS does theoretically give a mechanism for therapeutic intervention- yes an 'exciting' time for therapy for genetic rare diseases but very early days...which may not be comforting for rapidly progressive disorders such as ALS




former CFLer Michael Soles has been battling ALS for about 15 years now, so protracted disease courses- while not the norm , are not unheard of
I think the disease takes a few different forms.

My grandpa for instance got wiped out in around a year. He could still walk until essentially the very end, but lost his voice early on.

Others might live for a couple of decades and those seem to be more the ones who remain able to speak, but confined to a wheelchair.

I don't think they really have any proven effective treatments either way.

At least Snow is rich and will hopefully be able to access experimental treatments.
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