When we have enough (about 50) responses the members of the group will be able to track how your ALS FRS scale is doing compared to previous ALS FRS scores for your type of ALS and compare your ALS FRS score to others.  In doing this you will be seeing in real time results for folks in clinical studies, and out of studies trying novel approaches and standard approaches. If your ALS FRS score is 36 at this time after diagnosis and someone else with the same type of ALS has a score of 44 it may well be worth looking hard at what they are doing differently.  It may be that they are 20 years younger than you, or it may be that they are on to something.

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Human data is the only way forward at present and the worlds largest source of such information lives in homes across this country with one huge difference, this ongoing massive knowledge base has not been recorded.  We have little information on what works once a treatment has gone to market.  This group will highlight what is working, and if it is working, how much of a difference it made to that person.  Giving you a better understanding of what is best for you.

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Humans are remarkable beings, we don't go into that good night without trying something.  That something could make a difference to others, to family members, to fellow vets. Even if at present you are doing nothing, get signed in, as others, that are paying a fortune for treatment may find their results are no different than yours.  This is the kind of understanding we all need to have.  LEARN MORE