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, June 26, 2015

Well Done, Good and Faithful Servant

Every now and then I can just hear God's words as one of our beloved friends with ALS arrives at the pearly gates.

Chuck Hummer fought the good fight.  He lasted a long time with ALS with help from his beloved bride and family.  ALS finally won yesterday.  It always does.  But Chuck made a huge difference in lives.  ALS couldn't steal the good that he did.

Almost a decade ago the ALS Association started something called their Virtual Advocacy Community.  Chuck Hummer entered our lives.

http://webla.alsa.org/site/PageServer/?pagename=LA_5_Advocacy_Community.html

Log in and look for OldChuck.  When I first visited that site, I seriously thought that OldChuck was ALSA's shill for their advocacy efforts. He explained and motivated. He wrote beautifully.  He treated people kindly. He was smart. He was the virtual mayor of the VAC and made it a great place for people interested in advocacy.

OC, as I called him, knew a lot.  He had a career in government work and knew the drill (and tricks) for getting funds in DC.  He had started a not-for-profit centered around his beloved Panama Canal, and he knew a lot about not-for-profit management.  And most important of all, he had been an AIDS activist with his son.  He saw that movement finally succeed, but it was too late for his dear son.  He knew much of what it would take for the fight against ALS to succeed.

So we had an awesome little VAC with quite the mayor.  ALSA had a gift.

Eventually he started challenging the status quo of 2006.  He asked questions about the return-on-investment for the big advocacy conference that ALSA held in Washington.  He pressed for bigger requests for funding.  He demanded better inter organizational coordination.  And he knew the rights of people who required accessible rooms at an ALSA-sponsored gathering.  He was pushing and pressing to improve the fight.  It was energizing.  Unfortunately ALSA never engaged in the energized VAC.

He was soon kicked out of the VAC.  Somebody at ALSA pulled out the rule book and managed to silence him.

OC felt so strongly about the cause and advocacy that he managed to sneak back into the VAC by setting up an identity with a grandchild's name.  The Washington Wizards (as he brilliantly called them after his first ejection) soon caught on and booted him again.

OC was my hero.

He was opinionated, but you didn't have to agree with him to be his friend.  ALSA missed out on a great force that could have made the fight so much better.

He was a pioneer in online peer support.  Google for gamboachuck or oldchuck or oldchuckles or grumpyals and you'll see a gentleman who was a godsend of support to hundreds of people with ALS and caregivers.

He blogged and he commented and participated in all kinds of online media.  He was kind and helpful to so many.  And could he ever write.

This morning I saw on Facebook how many people who benefited from his love and mentorship are grieving today.

You were a good egg, OC, and a Double Domer to boot.

How I miss you already.

R




1 comment:

  1. https://www.facebook.com/notes/chuck-hummer/old-alsa-advocacy-community/148582338542165?pnref=lhc

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