ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Monday, February 16, 2015

Their Words Give Meaning To Now

Today Genervon made a statement about their FDA request for accelerated approval for GM604 --

http://www.genervon.com/genervon/about_pressreleasestxt.php

I share two reactions from people with ALS.  They speak to the meaning of action.  They speak to the meaning of urgency.  They speak to the meaning of time.  They speak to the meaning of now.

From a tweet this evening --
"Gracias por este movimiento.. Fui diagnosticada con ALS a mis 31 aƱos y deseo una cura pronto.."
From a participant in the als.net forum where the Genervon petition started --
"I really don't know if I have 30 to 60 days left, then how long to ramp up production, might as well be a 100 years. it would still be nice to know this awful thing is beat."
When their now is gone, it is gone forever.

And we must not let our understanding of that fade like slogans on t-shirts.

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