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.

Saturday, April 12, 2014

Sometimes A Single Voice IS All It Takes


This is a story of two funerals and those single voices.

1.  Last week a powerful single voice was buried at Arlington National Cemetery.  An Army colonel, retired by ALS, had become a voice that called out weakness in the VA healthcare system for veterans.  He called out ALSA, the CDC, and ATSDR for weakness in the ALS Registry.  He called out the FDA for a system that needed to get ALS patients' perspectives.  He never minced words.  He knew how to lead and how to cut through government-speak.  He caused discomfort in a system that needs to change.  Our nation paid beautiful tribute to him for his military service.  Everyone involved with the fight against ALS should pay tribute to that single voice, too.  He asked good questions and demanded answers... regardless of how uncomfortable he made you.

2.  Last week a wife/full-time caregiver/soulmate to a man with ALS died unexpectedly.  It's not supposed to work that way.  The shock, pain, and practical problems were huge.  An individual woman who helps people who fall through the considerable cracks in ALS organizations' support systems stepped up.  She is one of those single voices who does not take "no" for an answer.  There were funds to raise for a funeral.  There were short-term and long-term arrangements to be made for the care of the gentleman with ALS.  There were difficult logistics in a system that doesn't move quickly enough.  Phone calls weren't being returned and a hospital's policies needed to be challenged.  Nobody should be kept from attending his own wife's funeral by a hospital's risk-management person.  And everybody with ALS deserves to live in a respectful setting that understands ALS.  And families need to grieve.  Yes, a single voice helped make it all happen.

This weekend I hope that all who pray will say prayers for those dealing with ALS and its aftermath... and special prayers of thanks for those single voices.  We need more like them.

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