Thursday, June 2, 2016
He Took The Ego Out Of SoMe And Made A Huge Impact
On a cold, dreary March day in 2015, individuals showed up in Washington to make some noise. This was not a highly-orchestrated Advocacy Day. This was individual people in the trenches with ALS who had studied and broadened their scope beyond one drug. By this time there were hundreds of thousands of signatures on the growing change.org petition. Nick couldn't be at the rally in person, but this was his in many ways. This was a moment in the fight against ALS.
By May, 2015, outside the big orchestrated Advocacy Day hotel, an even bigger group of individuals rallied. These were thoughtful, well-informed people involved with ALS. They were getting the attention of the FDA. Hope Now for ALS became stronger yet still true to its grass roots. And the petition grew and the ALS establishment was still trying to figure out who Nick Grillo was.
And the petition had almost 800,000 signatures.
Nick died this week. His quiet impact was huge. He helped individual advocates find their voices and power. Nick wasn't about Nick. His work was always about getting faster access to investigational drugs for all with ALS.
Nick Grillo changed the game, and we are grateful. And we must carry on.
Posted by ALSadvocacy at 8:22 AM