@SteveFDA I am 61 years old & was diagnosed with ALS on February 14, 2020. I had always been healthy & led a healthy lifestyle. No drugs, no smoking & drink alcohol only socially. I have been robbed of my retirement after working for 45 years & my many plans for my golden yrs.
@SteveFDA I was going to get on a clinical trial immediately upon my diagnosis, but because of the Covid-19, it was put on hold, and is still on hold. Since that time, I have become very weak and unstable & my voice has been affected.
@SteveFDA ALS can strike anyone, at any time. It could strike you, or a family member. I never dreamed I would be struck with such a horrific & debilitating disease before I was able to enjoy my retirement, which I have been looking so forward to.
@SteveFDA The fight against the Covid virus, deserves the urgency, but Where has the urgency & funding been in the fight against ALS the last 150+ yrs? The mortality rate for Covid is less than 1% of people infected. ALS is always 100% FATAL!
@SteveFDA The Nurown-Brainstorm trial has been very promising & has helped a lot of people. Would you please sign an executive order to have the FDA to approve Nurown IMMEDIATELY, which could slow progression & possibly save my life & the lives of other ALS patients.
@SteveFDA Please allow ALS patients suffering with this horrific disease access to unapproved drugs & therapies. We need to access Nurown, now. What would we have to lose?! In addition to Nurown, other promising therapies include: AMX0035; Cu-atsm (Copper ATSM); TREGS
@SteveFDA MOMENTS MATTER WITH ALS. ALS IS NOT AN INCURABLE DISEASE. ITS AN UNDERFUNDED ONE.
#ALS
#NurOwn
#ENDALS
#alsassociation
#ALS
#NurOwn
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#alsassociation
