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.

Friday, August 15, 2014

We Interrupt A Week Of Magnificent Ice-Dumping For A Few Thoughts

And what a week it has been.  Who knew that the letters A-L-S would be said by top celebrities, heads of corporations, politicians, elite athletes, (and tens of thousands of us who have lost loved ones to ALS) as we watched entertaining videos of ice water fall over heads?

And when Ethel Kennedy took the ice, we just knew that good things would follow.

It has been a good week for ALS awareness.

But we have much more to do.

  • What happens to the windfall of public generosity?  We hope that it will enable an infusion of radical new thinking in the fight against ALS.  Perhaps the two young men with ALS who got it all started, Pat Quinn and Pete Frates, would be good advisors for some "think different" uses for the generosity of so many.
  • Not everyone who has basked in a video has conveyed ALS awareness.  We hope that a communications person from one of our national organizations has had a chat with Brooke Shields and Wanda Sykes by now.  Obviously the ice doesn't magically impart an understanding of ALS.
  • Unfortunately the ice-dumpers have much higher odds of getting ALS than most of them would ever imagine.
  • And no media interview should ever forget to mention Pete Frates and Pat Quinn.  Ever.


Some friends have asked me about charities that might be like the small, high-impact charities that Bill and Melinda Gates often mention.  I'm about as far as it gets from Mr. and Mrs. Gates, and there are many good charities in the ALS space.  Many are woefully underfunded.  My new favorite question is, "How will you put my $100 donation to work in the next 30 days?"  Sometimes the answers aren't glamorous, but every charity should have a direct answer for you to measure next to your goals.  And certainly, Google and 990s are your friends.  Here are some thoughts.

ALS TDI www.als.net
This is a not-for-profit biotech lab focused solely on ALS.  They have a specific, new research project that could use your $100 donation. http://www.als.net/ips/prescreen/?f=hr  It's immediate and important for advancing the science.

The Gleason Initiative Foundation www.teamgleason.org
Most of us know about "No White Flags," but few know that behind the scenes, Team Gleason works hard on issues of enabling technology for people with ALS. Your $100 can help supply technology to people with ALS in need.

And certainly there are more.

Not-for-profits are risk-averse, and it's time for us donors to start investing in and demanding some smart risk.  The fact is that what we have done in the past has failed to deliver a treatment for ALS.

And never forget Pete Frates www.petefrates.com and Pat Quinn www.quinnforthewin.com

Holy moley, it's time for GMA and more ice buckets.  Will David Muir's hair go next?


#ALSicebucketchallenge  #StrikeOutALS

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