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Nikki have you had an NFL test? How does yours compare with ranges found in research papers? I wonder if that correlated with your slow progression?

Does ALS affect the ability to urinate? My dad was unable to urinate at all and needed a permanent catheter. His neurologist and urologist said it was completely unrelated to his ALS and was caused by other issues (such as an enlarged prostate). Is that not true? He also had severe...

Mark Cuban created an online pharmacy called Cost Plus Drug Company. You can purchase many drugs (with prescription) without going through insurance and without much of a markup. Unfortunate they dont have any ALS specific medications at the moment but they are adding new medications...

What do you mean Waves had a special design? Do you mean that Waves looks to only attack the bad copy of the gene vs both in Biogens? What is Dr. Browns approach?

Any word on if Wave's aso clinical trial is still going? Have they commented at all?

Biogen's ASO targets the V1 and V3 variants on the mutated and normal chromosome. Wave only targets those on the mutated chromosome. Hopefully that is the issue.

The report says it did not support the hypothesis that reducing RNA and DPRs would stop disease progression. It does not say if these were reduced in patients and by how much. Hopefully they weren't reduced enough? There arent many details. How long does it take to get the full results usually?

Unfortunately I do not have access to message to Dr. Harms anymore about his thoughts. He did say awhile ago that the other ASO's (Wave and Dr. Brown out of UMASS) are different enough so hopefully their results and other C9 treatments could be positive. Will Biogen try another C9 treatment...

Do they schedule you for an appointment right away or is there usually a waiting list?

Cant you stop the experimental treatment like one month before the first trial appointment? There usually are limits how long you need to be off of something to participate in a trial