“We are not Jellyfish”

ALS hits hard. No question, whether you are living alone, a single father, a mother of three, a grandparent, a college student, a professional athlete… life gets flipped, and your priorities shift.

Some people choose to live privately with their disease. Others become activists in their own communities. Still others fight to position themselves at the front door of pharma companies, research institutions, and regulatory bodies, advocating for sustainable change.

Sandy Morris (July 2, 1966 – August 28, 2022) was one of those individuals who chose to make a ripple in how things are currently done to change the ALS experience for those individuals diagnosed with ALS in the future. She did not do it alone, she had I AM ALS (the institution Brian and Sandy Wallach created), as one of her platforms. She worked with fellow powerhouse ALS advocates: Gwen, Phil, Michael, Cathy, and Bob. In the ALS community, she was a real-life superhero. Her obituary and her I AM ALS profile do a great job of describing her activism and positive relentlessness in more detail.

I was privileged to join the I AM ALS community trials group in 2020, and got to hear Sandy’s fireball personality push back on big pharma’s regimented processes. She and the rest of the group emphasized the PaCTD rating criteria  they had developed along with the FDA guidance for the industry they had influenced. Her usage of the word “no” and “we are not jellyfish” forced the FDA and companies developing drugs for ALS to get creative, and listen to the patient perspective. This resulted in the development of more humane clinical trials with smaller placebo groups and less lengthy trial durations. An example of their impact is the Healey Platform Trial.

Sandy was slightly younger than Martha (born in 1966 instead of 1963) and is survived by her three children. Her legacy lives on in publications such as in The Nation and in the real changes she and her colleagues at I AM ALS created and are continuing. A clear example of their impact is the BioCentry podcast that features Senator Richard Bill. If you skip to minute 12:40 you can hear Sandy’s words spoken by the MC:

“What patients are saying is: it’s not enough, and it’s not fast enough…There is a sense that the FDA isn’t really in a position to be the driving force behind solving the problems of developing new therapies for neurodegenerative diseases, particularly those that don’t have therapies, really good therapies, like ALS. They need to be part of the equation but they don’t need to be the quarterback.”

The quarterback is the people living with ALS. Sandy Morris effectively and clearly navigated that field. Now it’s our job to keep that momentum going.