Genervon

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emi82

Member
Joined
Mar 13, 2014
Messages
24
Reason
Loved one DX
Diagnosis
12/2013
Country
US
State
Maryland
City
Bowie
I just received an email that there is going to be a rally for ALS in Washington DC on March 25th at noon to ask FDA to fast track drugs. My family lives very close to DC so was hoping to go.
 
I don't know if this has been mentioned before but I was reading the blog by Eric valor who was the late stage ALS patient trying the GM6 drug. His blog is friends4eric.org
 
Hi everyone - they are live tweeting the event #fdahope4als
 
Sorry - I didn't realize there was already a wonderful thread in the ALS research news section
 
This is the latest White House Petition for GM604

we petition the obama administration to:

request the FDA to grant "accelerated approval" to potentially life-saving treatments for ALS now - starting with GM604.

30,000 Americans and our families struggle to find hope in our battle against Amyotrophic Lateral Sclerosis (ALS), a rapidly progressing, terminal disease with no available treatments. I, V. Michael Fulginiti, and the undersigned petition the Obama Administration to request the FDA to grant “accelerated approval” to potentially life-saving treatments for ALS now, starting with GM604. As a result, people with ALS (PALS) will have legal access to GM604, providing them and their families with a new reason for hope–an opportunity to fight for life or, worst case, to have the option to die trying. If the FDA fails to act, then PALS today will die without a chance. We ask President Obama to stand with all of us and deliver the hope he promised when the American people elected him President.

Published Date: Mar 25, 2015

Issues: Family, Health Care, Regulatory Reform

https://petitions.whitehouse.gov/petition/request-fda-grant-accelerated-approval-potentially-life-saving-treatments-als-now-starting-gm604
 
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