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.

Tuesday, December 16, 2014

Should This Disease Be Forgot?

A few weeks ago on a national NPR program, a caller mentioned last summer's dumping of buckets of ice and said, "Uh, what was that disease?"  Time passes on.  So do memories.  The disease that was on the world's mind and lips in August is fast fading back to its shadows.

There are year-end memories of the entertaining ice and the videos.  There are year-end memories of the buckets of money that were donated.  Who is talking about the outrageous disease that motivated it all -- ALS?

Picture a football stadium full of people.  Imagine that many people being killed by ALS.  Yes, that many people have been killed by ALS in the few months since we dumped ice on our heads.

During the heat of the ice bucket challenge, I made a series of very modest online gifts to a number of ALS charities (the kind at add up to hundreds of millions of dollars when people everywhere give them).  I got the autoresponders.  I got a few nice letters.  I got my tax receipts.

I've not gotten any insights into ALS.  I've not gotten any year-end "thanks and here's what we did with your contribution" messaging.  Were I not previously involved with ALS, I've not been given any reasons to stay committed to the disease.

ALS charities have email addresses from all of those who gave spontaneously and generously online in August.  Today's donors don't want constant requests for more money, but perhaps they would like some reasons to continue an interest in ALS.  Perhaps they need to be thanked again and again so that they know that the disease persists and must not be forgotten.

Awareness is critical.  It's a long-term proposition.  The success isn't in hundreds of millions of dollars. The success isn't in the entertaining viral videos. The success isn't in the media coverage that talks about dollars but not the disease.  True success will be in the awareness and relationships that will finally give the world the resolve to deal with this outrageous disease.  That awareness needs to be cultivated.

And today we already have people saying, "Uh, what was that disease?"




2 comments:

  1. People need to learn more about ALS. This disease is real so do your self a favor find out more.

    ReplyDelete
  2. I've been coping with ALS for 11 years and most of that time was spent on social media trying to change Lou Gehrig into ALS . I partnered with 3 others who used the same tactics to raise ALS awareness . It took a college baseball all-star 3 months to putt ALS where it belongs while breaking all current records of fundraising . This may never repeat it's self, ever . Now is the time for action, don't blow it . Our group is still watching,

    ReplyDelete