ALSA President's STAT editorial re AMX

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lgelb

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Editorial is here, showcasing all the reasons ALSA can't be trusted to represent P/CALS, science, or reality. This piece smacks of American exceptionalism, lauding the FDA's horrific approval of Aduhelm, and calling out the FDA for all the wrong reasons. It's like "Peggy got to rob a bank, why can't I?"

Amylyx has a legitimate case to make -- this isn't it.
 

Lkaibel

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Why I wonder is ALSA in the business of lauding the approval of Aduhelm? I realize that it’s also for a numerological condition, but one very different from ALS in so many respects.

I might also add that I am waiting for someone to acknowledge that the last big news approval for ALS drugs was a giant flop (and I believe directly responsible for my husband’s sharp decline), but hey there were many thousands to be made off an essentially experimental drug abs CALS and PALS are desperate so who cares, right??

I also don’t give a too if a REALLY effective treatment comes out of Minnesota, Helsinki, or Uganda… American exceptionalism be damned.
 
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Clearwater AL

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“Advocates blast the FDA for not moving as fast on ALS as on Alzheimer’s.”

It’s the numbers… there are 6.2 million people with Alzheimer’s in the US
over the 18,000+ people with ALS.

If anyone remembers months ago I wrote a treatment for ALS will/may be
linked to a treatment for Alzheimer’s. Something I follow closely with Ann
being diagnosed with the early onset of it. Ann, like many here is slow
progression, it was found early, she takes her meds without a miss, she
keeps occupied, does Suduko, reads and texts her friends and most
important her B12 shots... unlike her sister didn't I mention below.
(The B12 shots is an on going debate but her Neurologist feels for her
it is needed along with all her other related meds.)

ALS is a terminal disease, fortunately, (it was hard to write that word, my
vocabulary failed for anything else) more and more are slow progression.

But, Alzheimer’s is a horrible disease. Ann’s sister has been in a Alz Home
for 10 years. Recognizes no one, not even her husband, stares into space…
other than Alzheimer’s she is physically healthy. There are many patients in
that Alz home who are the same as Ann’s sister… physically healthy with years
and years to go. And… it’s the duty of the Alz home to keep them healthy.

Finally, they can’t decide to leave on their own terms as PALS can if they
choose.

It’s the numbers, it’s the money, long term COC (cost of care) driving the
pursuit of a Alzheimer’s treatment.
Hopefully from that it will discover a link applicable to ALS.

Sorry to ramble on but it’s something I am somewhat familiar with.
 
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lgelb

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Of course, Al, I'm not minimizing AD. My dad has it, as did my grandmother. A bit off topic, but has Ann looked into the MIND diet?
Even when AD is already underway, it might slow progression. And yes, AD lifespan is longer and more costly in every way.

There are biochemical similarities between ALS and AD, MS, schizophrenia, and more, that are being leveraged in research, absolutely.
 

Clearwater AL

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No on the MIND diet but... we will send a message to her Neuro Monday.
Thanks.
 
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