Article below
Main takeaway for me:
The research is population based. Inherently this is flawed due to the fact that not all countries have the infrastructure to accurately account for ALS prevalence in their population. Leading to once again systemic under-reporting of this horrible disease. Even in the US ALS is captured predominantly on a voluntary basis. This is equivalent to asking the fox how many chickens are in the coupe, laughable.
I get that ALS is categorized as rare and not worthy of the attention other conditions, the science supports this stance. However… however! The financial toll this particular disease creates on families is without comparison. Until this burden is impactful to the government it will continue to remain the burden of families to navigate the cost and lack of viable treatments.
At this point in time it appears that treatments would lead to reducing the profit margin for services and goods for pALS. It appears this way, I prefer to think that there is not a Cabal scheming to keep us from treatments; that’s only in the movies.
I do believe that the science has not coalesced with the heart and soul of ALS to break down barriers standing in the way of viable treatments. What’s the solution? I wish I knew.
Make your own conclusion, read, digest, interpret.
TJ&O
ALS TEXAS DAD 