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, September 3, 2022

Hi, I'm Sandy's Friend, Cathy

 We lost Sandy Morris to the stinking ALS this week.

As many of you know, she was a huge influence for the better in what we called ALS Land.  If you didn't know her, just google "Sandy Morris ALS."

I've been working at ALS advocacy for a quarter century.  I'm just one of many, and I work hard pounding away at the boulder.  Sandy made the boulder crack.

Sandy made everyone involved in the fight against ALS better, from us simple advocates to top researchers and heads of state.  People knew her and admired her and listened to her because she was right and did not cling to anything of the past as good enough.

Keep in mind that people come along in ALS Land and push the envelope all the time, but seldom do they make a significant dent in anything.  I knew Sandy was the real deal on July 12, 2018.  ALSA held a meeting in Washington to talk about the FDA ALS Guidance (again).  Many of us were tired of talk, but a group of esteemed scientists and people living with ALS were assembled and talked some more.  During a Q and A a woman from California called in and asked why we didn't just play the transcript from the February 25, 2013 hearing on ALS because we were just rehashing everything that had been said then.  Boom.  I knew that Sandy Morris from California was the real deal.

Many of us miss her terribly this week, mostly as a friend, but also as a leader.  Sandy knew how to run a meeting.  She had charisma, but she didn't depend on that.  She always had an agenda.  We always started on time and finished on time and every person understood the homework to be completed before the next weekly meeting.  Sandy had vision and the human skills to manage projects to move to that vision.  How we miss her.

The tangible accomplishments Sandy delivered are immense, and nobody paid her a dime to do what organizations and staffs have never been able to deliver.  Expanded Access started to happen in ALS Land because of Sandy.  She studied, always wanting to have her facts straight, then she acted with purpose.   Legislative efforts were effective because of her relentless efforts.  And drug developers started to design more humane trials because Sandy insisted and taught us all how to insist.  And the Morris ALS Principles will set the tone and boundaries that have never been established before for those dealing with ALS.

I'm very happy working behind the scenes and it was a treat to help Sandy. I go to conferences with top ALS researchers, and most are oblivious to me.  I learned a couple of years ago to introduce myself, "Hi, I'm Sandy's friend, Cathy."  Suddenly they pay attention. Sandy and I joked that my name is now officially, "I'm Sandy's friend, Cathy."  

Sandy was also a talent scout for ALS Land.  She had people skills that brought some immense talent into the fight to work along side her.

We have a huge void in ALS Land this week.  One person can't fill it.  I just hope and pray that we can all chip in the talents we have to keep making cracks in that boulder that Sandy started so well for us.

We muddle ahead in a grief fog this week, but we have homework that is due next week.  And we must deliver.

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