Non-C9ORF72 familial ALS and exercise risks?

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fjay

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Jun 8, 2021
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Reason
CALS
Diagnosis
05/2021
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UK
I understand there's some evidence that a history of intense exercise is a risk factor for the development of ALS in individuals with C9ORF72 abnormalities.

But does anyone know what the evidence looks like for non-C9ORF72 familial ALS?
 
The evidence for exercise even for c9 was less dramatic than it was presented in the papers and in the initial online discussion. It caused a lot of concern in the c9 community and one of the authors kindly consented to speak with us. He said even with c9 the evidence was not strong enough to recommend changes at this time. I don’t know how much data they have for other mutations but they didn’t express concern. The problem for c9 of course is the we don’t know enough yet to recommend against exercise. This leaves carriers to wonder what if I exercise strenuously as they are right or give it up and they are wrong? Moderation is probably good in this area
 
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