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, November 7, 2015

You Wouldn't Think Of Letting That Elevator Door Close


Especially when the waiting person is in a wheelchair.

Yet we close the door in the faces of those with ALS all the time.

Here's an example from twitter today.


It was an interesting article on the virus theory that has been in the news lately.  A woman with ALS responds below.  She's interested in the trial cited in the article.  The article failed to contain trial contact information for those who actually have ALS.


On a long shot, I searched clinicaltrials.gov.  Odds were that I wouldn't have the right keyword for the products involved and wouldn't find it.  I got lucky and found it.



Everything is hard for those with ALS.  Life would be so much better for them (and quite frankly, trials would be filled much sooner) if people would simply make sure that they're holding the door open for those who don't need more barriers in their lives.

After all, they are why you're doing the science that is published in the first place.


1 comment:

  1. The situation:

    30,000+ people with ALS in the U.S. now
    5,000+ diagnosed every year
    average survival time from diagnosis = 3 years
    average time for Phase 3 clinical trial & drug approval = 5 years
    3 drugs (already shown to safe & efficacious) ready for Phase 3
    2 of the 3 being offered outside the U.S.
    The FDA has the legal means to make them available now

    A person both dies from, and is diagnosed with, ALS approximately every 90 minutes in the U.S. Non-approved drugs have shown to be both safe and effective in humans. The FDA refuses to approve them, although they are being exported to Europe and Australia. When your mortality hangs in the balance, shouldn’t you have the right to try to save your own life? wrickyj@yahoo.com

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