Where is diagnosing taken quicker in genetic? In a few academic centers maybe. Generally coming in speaking of your belief you have als is a sign of malingering by neuros. Truly some drs fasciculations are a dx aid if the patient is unaware of them!

My father in law was an amazing human and always very kind to me. Pancreatic cancer is much more common than ALS or FTD and it has a worse survival prognosis. I was so moved by my husband being a caregiving son even if it made parenting harder for a time. 2/2

The goal should be to stop and reverse paralysis. Not all these side quests that may be interesting and of some consequence, but not at the level of terminal progressive paralysis.

One thing we must be cautious about is separating signs of als - which are intriguing for disease pathogenesis and druggable pathways - and what is clinically meaningful in als. Which is not being paralyzed.

Interesting theory.

Ultimately these EAPs are often good business sense- when they aren’t good business sense (ie pharma is not paying) we shouldn’t ask why rather then paying for them in other ways.

Pharma does EAPs in phase 3 to 1) keep people alive to become customers when they have amazing evidence as in aids 2) to great customers if they think they are being approved. These drugs with weak evidence in phase 3 for als have no business doing EAPs as they have no business being phase 3s often

But how is it a need the government should pay for? Also why should anyone take it if it doesn’t have evidence of working?

Why are we doing this at all? If people want “hope” they can go to als untangled.

Voting implies consequences. There are no consequences to an advisory boards recommendation. They don’t make the decision. It’s very confusing for reporters.

This is very disturbing.

All things are on the table when facts don’t matter and anecdotes lead the way. Well all things except curing the disease.