Dave Johnson ie: ALS

[Caretaker me]

for Dave Johnson, thanks for getting involved with ALS, don't know what you situation is, but hope all is well, my daughter has ALS sister's disease SMA 2 and my wife , daughter and I are involved with this form of MD, keep up the fight, we have been fighting for 19 years now and if I didn't have detecting for the couple of hours a week , I would snap, thanks for making products we can escape every now and then

 

[Dave J.]

The ALSTDI Treatments Forum is the best forum on the subject of motor neuron disease therapeutics, by such a wide margin that no other forum can even be said to be in second place. The moderator Eric, I believe he has the SMA variety of motor neuron disease.

The tragedy of motor neuron disease is that the objective of research is to develop "a drug" to get past the FDA without the need for real effectiveness, thereby leaving the problem basically unsolved needing yet another drug, until there are finally enough drugs with FDA approval that all told they'll max out most medical insurance policies. Nobody in the industry is asking the simple question "I wonder what it would take to cure a patient?" since that's an outcome that could provoke the wrath of a huge pharmaceutical establishment. Therefore therapeutics are an individual patient do-it-yourself project with the MDA and ALSA etc. unwilling to provide any useful guidance. The Ceftriaxone trial illustrates how utterly corrupted the system is: the ringleaders of that one should be going to prison for it, but instead it's good for their careers.

--Dave J.