Tofersen?

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Gizzmo

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Joined
Oct 16, 2022
Messages
27
Reason
CALS
Diagnosis
00/0000
Country
US
State
WI
City
Green Bay
I have a few question because this all so new and confusing to me. My hubby is on Riluzole and Relyvrio along with a lot of other meds for Als sysmtons from a few depression and meds to make him hungry . He had a lumbar puncture to see if it would show some answers. The C9ORF72 says negative and the ALS Panel /Frontotemporal Degeneration Planel / Sequencing and Deletion are negative. Which I am glad but does that mean he will not be able to try these new drugs if the FDA approves it on April 25? #NurOwn or #Tofersen .

Also wha type does he have. Seems people say I have this kinda or type. He has weakness in his arms which hardly wants to work but they do at waist high. And his shoulders muscles are pretty much gone. Any answers will help with the stress of not knowing Thanks for the help.
 
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Tofersen which hopefully will receive at least conditional approval next week is only for pals who have the sod1 genetic mutation ( about 2% of pals). If he had a negative genetic panel then he ( like almost everyone here) won’t be eligible nor would it be likely to help

nurown is not going to be decided on next week. Their next step is an advisory committee meeting with the fda. nurown forced the meeting so there is considerable doubt about the outcome. IF the ADCOMM were to be favorable ( large if) and IF the FDA went on to approve it then it would not be restrictedto a genotype but would likely be restricted by insurance to people who matched the trial responders. I think that was frs 35 or more and under 60. I don’t know this for a fact but radicava coverage was limited like this and nurown is even more expensive. The Nurown ADCOMM has not even been scheduled yet
 
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