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, April 9, 2013

Time To Ditch The Blinders And See Whom We've Left At The Side Of The Road

It's always easier to get a large group moving in a common direction if you try to keep them focused on one goal.  Cut the distractions.  Beam in on a clear deliverable. Deliver.

Over the years an annual legislative priority for ALSA's Advocacy Conference has been to provide funding for the DOD ALS Research Program.  The case is built on the fact that those who have served in the military are much more likely to be diagnosed with ALS than the rest of us.  The science is still a mystery.  The solution is a mystery.  Research funding will help solve those mysteries, and we owe that to those who give so much to keep us all safe.

Focus. No distractions. Make the case. Deliver.  But while we're making the case for those long-term research goals, can't we slip off the blinders for a few minutes and see the near-term problems that our veterans with ALS face every day today?

Take a look -- http://scjohnson63.tumblr.com/

Many of us are clueless about the VA healthcare delivery system and rules.  Add to that the complicated and difficult disease that ALS is every day.  What we see when we slip off those blinders and peek at the here-and-now is not as easy as asking for research funds.  It involves an arcane healthcare system and a disease that presents unbelievable challenges for patients and caregivers, many of whom are spouses and children.  Those challenges change rapidly, and the word "rapidly" isn't used in many sentences that also contain "VA."

Our overall sense of national outrage about VA waits rose last week.  We should also be willing to take off those blinders and look at our ALS veterans in the eye.  If we step up for them with a fraction of the effort that they gave for us, this can't be a difficult set of problems to solve.  But first we have to look.  Then we need  to work.  No show-horses needed.  This is work-horse time.

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