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, January 1, 2013

It Is With Mixed Emotions That We Face 2013

The Good News

For the last couple of weeks we have received messages from our ALS not-for-profits celebrating the achievements of 2012.  As we all considered our year-end donations, those ALS organizations burst their buttons with the "promise" that they delivered in 2012.

The Bad News

Last year was also a horrible year for over 120,000 families globally (over 5500 families in the United States).  They buried loved ones who died because of ALS.

The horrible years have gone on year after year after year.  The numbers have not diminished in any way.  The cumulative loss is staggering.  The world learned of ALS when Lou Gehrig was diagnosed in 1939, and we have failed to deliver on any of the annual "promise."  

So...

There is a quote attributed to Einstein that it's insanity doing the same thing over and over and expecting different results.  Today is a good day to reflect on that.  

Resolving and Evolving and Revolving

On New Year's Eve in Italy, there is said to be a custom of tossing out old pots and pans and dishes and furniture through the windows as a kind of cathartic housecleaning ritual.  In the fight against ALS, how do we figure out which is the clutter that is holding us back?  How do we toss it out?  

In the difficult world of not-for-profits trying to establish sustainability, do we get stuck in some ruts of "promise" that never have to face the fact that we have collectively failed year after year after year to make a meaningful dent in the tragedy of ALS?  "We have failed" does not make a great fundraising slogan.

Today I ask myself how we can make some meaningful change in 2013 by letting go of some old pots and pans.
  1. As news has been all about the Fiscal Cliff, the U.S. National ALS Registry has come to mind. We have fought hard for the approval and continuing funding of the Registry.  It is critical to have the epidemiological clues that it will yield; however, have we been overfunding the project?  Did we lose focus by appropriating extra funds that let the CDC stray from the core project with unnecessary and confusing tools? Has the project grown to spend a budget because nobody gets a gold star for not spending a government budget?  Can we regain focus on the Registry itself in 2013?
  2. Travel agents and Realtors have had to redefine their roles in the last decades.  They can no longer be the owners and purveyors of information that made them indispensable.  The world of information has opened up access and they had to find different ways to add value to business propositions.  Our disease-related not-for-profits have long been used to being the voices of their patients and have owned much of the messaging and information.  Those days are quickly coming to a close, too.  Patients can and should be heard directly.  Information can and should be accessible.  Can we help our not-for-profits adjust their roles to add value without being the sole controllers and purveyors of information and messaging? 
  3. A scientist with ALS has a mantra about the experiments that people with ALS try -- "If it is done in secret, then it is done in vain." From the days when Eleanor Gehrig tried special greens laden with Vitamin E from Central Park in Lou's diet, people with ALS try things just in case they might help.  Some of these experiments are pretty innocuous.  Others are risky or expensive.  If patients would simply share their data (good, bad, or indifferent) it would be of immense help to those who follow.  It might even give some scientists some clues.  For decades we have lost valuable information. I'll bet that somebody today is looking for Vitamin E for a person with ALS because somebody thought it might help.  Think of how the fight against ALS might change for those dealing with it today if patients and families could look at the use of Vitamin E by people with over the years.  Many people with ALS look to our ALS organizations for advice.  They can't recommend experimental treatments, but they certainly can encourage people trying things to capture their data in a place where other patients can benefit from their experience.  The technology at a place like www.patientslikeme.com makes this very possible.  Is it time to encourage the patients and their data to speak?
Best wishes for a happy, healthy new year, and to all of those who have been dealing with some tough holidays without their loved ones lost to ALS, you can be assured of our prayers and our resolution to fix some things in the fight.






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