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, May 6, 2016

In Case You Wonder About The Jacket Or The Sign

If you saw my yellow jacket with the painting on the back or my sign, here are the quick backstories.

The Jacket

The jacket is #300 in Regina Holliday's Walking Gallery project.  Regina is a gifted artist and patient advocate who paints patient narratives on the backs of jackets to bring them into conversations in a very real way.  You can google to find the complete story of how Regina asked to paint The Rolodex of  some of my friends lost to ALS.  She delivered a treasure in the fight against ALS.

The Sign

Gregg Doyel is a talented sports journalist who had a dear friend with ALS.  He wrote several columns about her and ALS, and the one he wrote in April, 2015, spoke eloquently to frustration and urgency as Maureen was dying.  His ending sentence has become a battle cry for many of us fighting for faster ALS drug approvals... and a more effective fight in general.

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