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.

Thursday, June 2, 2016

He Took The Ego Out Of SoMe And Made A Huge Impact

Late in 2014 a few people with ALS were asking questions about an experimental drug in the forum at als.net.  After  few weeks of frustration over the time it takes for people with ALS to get their hands on investigational drugs, a gentleman with ALS quietly posted a change.org petition requesting access.  These things happen all the time, but Nick Grillo struck a chord with hundreds of people who want those with ALS to have a better path to experimental therapies.  Nick worked online and a few hundred signatures became a few thousand.  Wow.  People were interested.  Nick kept working and updating the petition and it became ten thousand.  Holy cow.  People were paying attention.  Media caught wind of it and it grew.  Organizations were having to answer questions and were trying to figure out who in the world this Nick guy was.  He quietly brought together different petitions and became the thoughtful glue that brought individuals into a smart new organized group called Hope Now for ALS.


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.

That's big.

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.



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