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.

Saturday, March 2, 2013

You Know What They Say About Squeaky Wheels

Only 255 comments have been submitted so far at

How many people are board members of ALS organizations?
How many people are employed by ALS organizations?
How many people raise funds for walks and events?
How many people volunteer for PALS and ALS causes?
How many people blather on online about ALS?
How many people have lost loved ones to ALS?
How many people have lost a co-worker or neighbor or a member of a church to ALS?
How many people sell goods or services to ALS organizations?
How many people work at ALS clinics?
How many people care about people with ALS?
How many people care about the next person to get ALS?



OK... We need for EVERYONE to mobilize and make comments to the FDA. It can be as simple as what so many people said on Monday -- The status quo is unacceptable.

If all the FDA hears are the voices of 60 people on Monday and a few hundred online, they won't feel the heat.

Please, it's not our ALS organizations' job to speak up for you. It's not your walk team captain's job. It's not your supervisor's job. It's not somebody else's job. It's YOUR job. Please submit a comment. Democracy works, but you know what they say about squeaky wheels.

Thanks. Just as you take care of your own oxygen first on the airplane, please make your own comments first, then help spread the word.  Please squeak the FDA into action.

http://www.regulations.gov/#!docketDetail;D=FDA-2013-N-0035



1 comment:

  1. ALS treatments need to be fast tracked--particularly if there is, in fact, a connection to the anthrax vaccine--which our military members were required to have a few years ago. We could be looking at a sharp up swing in new cases.

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