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.

Wednesday, August 27, 2014

Do We Have An App For You!

It will send you a text message with the name of a person who just died from ALS.

You'll get a new message every four minutes.

That's every four minutes all day.  During breakfast. During conference calls.  Through lunch. During meetings.  Every four minutes your dinner will be interrupted with the news of another death.

Turn on your phone after a 3 hour flight, and you're looking at 45 names of people who just died.  You may have five more messages when you get out of the shower.  And 30 more people are gone in the time it takes you to mow the lawn.

ALS doesn't take weekends off.  During an hour at church you get another 15 new names.  And after a concert, there may be 50 more.

It won't stop while you sleep.  Every four minutes.  After a blissful night of sleep, you'll wake up to over a hundred new names of people who died while you snoozed.

Every four minutes.

And for those waiting until October for a meeting where you will work on a plan for the #ALSIceBucketChallenge windfall, you will have been informed of over 10,000 new deaths before you've invested a dime in new ALS research.

3 comments:

  1. We need a leader with the smarts and the passion borne out of a deep persnonal connection to ALS.

    ReplyDelete
  2. 10,000 more deaths by the October meeting? Do you mean world-wide? Don't think the number could be that high for just the U.S. since there are only 5 or 6 thousand ALS deaths in the U.S. in an entire year. But there are too many and too many suffering living with this disease.

    ReplyDelete
  3. Yes, those are global numbers. US is only 4.5% of global ALS problem.

    ReplyDelete