ALS may be stealing Sandy Morris’s speech, but it won’t silence her when it comes to advocating for the rights of herself and the other 30,000 individuals estimated to have the dreaded disease.
Commonly dubbed Lou Gehrig’s disease, after the famed baseball player who was forced to retire after being diagnosed in 1939, ALS stands for amyotrophic lateral sclerosis. Despite the disease’s long existence — it was first identified as ALS in 1874, with earliest descriptions dating back to at least 1824 — its treatment options remain slim.
“It’s a barren wasteland of nothing,” Morris, a Truckee resident, told Moonshine Ink.
ALS is a progressive neurological disease that results in the death of the nerve cells in the brain and spinal cord that control voluntary muscles throughout the body. As the nerves die off over time, they lose the ability to trigger certain muscles. The muscles ultimately become weak and eventually are paralyzed. Most diagnoses come between the ages of 55 and 75, and life expectancy is only two to five years from the onset of symptoms.
Morris was horseback riding with her family one summer day in August 2017 when she couldn’t manage to get her heels under the horse — something she ordinarily could do without even thinking about it. After some good-natured teasing from her husband, Joe, and daughter, Kylan, she was on her way. What she didn’t know was that that was the beginning of her paralysis. A few months later, when the family was at a rodeo event in Las Vegas, the changes were becoming more apparent: For Morris, the thought of trying to walk from one side of the casino floor to the other was daunting.
By January, she found herself in the medical offices of the University of California, San Francisco, prepared to stay as long as it took to receive a formal diagnosis.
“I had pretty much diagnosed myself,” she recalled, saying she’d thought to herself, My god, I think I have ALS, as all symptoms were pointing in that direction.
At 51, Morris didn’t fit the profile for ALS, but by then she knew that there were plenty of others who didn’t fit, as well. ALS is a disease of deduction, however, and doctors determined she did indeed have it.
“The day of my diagnosis, I prayed for bravery because I knew what this disease is going to take,” she said of that fated day, Jan. 6, 2018. “But I have to say, I am completely unafraid and I never — the only time I cried in a hospital was when I was afraid they were going to say those three letters with my daughter next to me … I could absolutely handle it all by myself, but Kylan was sitting next to me and I just wanted her out of the room. She was too young for it. She was 20 years old.”
With no existing treatments for ALS, Morris knew her only hope was to become part of a clinical trial. What she quickly developed, however, was an opinion that there was a complete lack of humanity in the trial process.
“I realized that ALS patients are just, they’re not worth saving,” she said of how she perceives patients in clinical studies are treated. “The bottom line is this: We’re no better than mice or zebra fish. We’re the exact same to the scientists and to the trial.”
In her case, Morris joined the Brainstorm NurOwn trial, the most promising at the time. It entailed one bone marrow aspiration, three spinal infusions, and four lumbar punctures over the course of the 11-and-a-half-month trial period, during which there was a 50% chance she would be receiving a placebo. She could feel the difference and knew the procedure was working for her.
But when the trial ended, it didn’t matter that she had been receiving the actual treatment. The trial was over and thus any hopes of buying time were dashed.
“When I read the [clinical trial] contracts, I knew that that was my catalyst, and I would make sure that no other 51-year-old mother of three would ever make a decision like this again,” she recalled. “That’s why we changed what we changed.”
Even before she was diagnosed, Morris had some awareness of how the system is broken for those facing ALS. When her diagnosis came, she knew she’d have to be her own advocate. It wasn’t long before she became involved with I AM ALS, an online community for those whose lives have been touch by the disease. She began working with the group to discover how to help bridge the gap in the ALS research community between matters such as clinical trials, community outreach, the Community Advisory Board, and legislative support.
Indianapolis-based individual ALS advocate Cathy Collet has collaborated with Morris since 2018. “In the years since, we have worked together on several I AM ALS teams and I respect her greatly,” she wrote in an email to Moonshine Ink. “Dealing with ALS is a lot for anyone. Many choose to make a difference by fundraising or advocating for an organization’s agenda. Sandy spends a lot of time and energy making new agendas and pushing them forward. That is a force that, frankly, is unique and needed.”
Multiple trips to South Korea — where in 2019 Morris underwent a bone marrow extraction and three spinal infusions to receive investigational therapy over the course of several months — have been interspersed with meetings with the U.S. Food and Drug Administration. She worked with FDA officials to revamp an ALS Drug Development Guidance document, finalized in 2019, which provides direction for drug sponsors in the pharmaceutical industry looking to develop treatments for ALS, and resulted in improved clinical trial design.
“With that, we ran out like Charlie in the Willy Wonka factory with the golden ticket, to all the drug sponsors to say, ‘There are new rules and you will follow them,’” Morris said.
She also formulated the idea to create PaCTD — Patient-Centric Trial Design — a database in which ALS patients could access the ratings of current clinical trials. She led a team that developed guidelines for humane, efficient ALS clinical trials, requiring them to meet nine requirements and be rated on a five-star scale.
“Certainly, she has the ears of top ALS researchers and the respect of every person with ALS,” Collet said. “… Sandy endured one of the most inhumane trials ever, so she knew of what she spoke. When the team started rating trials with stars, one sponsor with a four-star rating asked the team how they could get five stars. Bingo. That’s proof. A sponsor wants to make a trial more humane.”
These days, as Morris is nearly fully paralyzed — she’s down to the use of her last two fingers — she can be found in her hospital bed or an office, surrounded by computer screens, using dictation programs and gaze-detecting software that tracks eye movement and moves the cursor accordingly. She’s currently working with renowned AIDS activist Gregg Gonsalves to help ALS advocates get organized in the same manner that Gonsalves’ coalition did in the early days of AIDS. This past May, I AM ALS published the Morris ALS Principles, named in honor of Morris. Inspired by AIDS advocates’ 1983 Denver Principles, Morris and others created this playbook establishing boundaries within the industry and defining the various roles that patients expect, as well as emphasizing the importance of the power of the patient.
Living in California gives Morris and other ALS patients a different kind of power, too — the power to say enough is enough and to “die with dignity” — and for that, she is grateful.
“I am all set up and I have been all set up for a year,” she said. “My family knows that my boundaries are when I can no longer communicate — and am not going to a [tracheotomy] —that’s when I’ll be checking out for my next assignment.”
Morris explained that ALS will weaken the diaphragm until the patient can no longer breathe, resulting in the need for a tracheotomy, which she refuses to have because, “My family should picture me being able to move my legs and my arms and use my speech the way I used to. We had a family meeting and they said that it was just too soon for them, so these kids carry me from bed to wheelchair to truck to wheelchair to wherever I need to be … sadly, this disease demands my life, but first it will take everything I have and then it will kill me … they’re just too young to be doing what they’re doing, but they’re not ready to lose their mom yet.”
Morris has already beaten the odds: She turned 55 on July 2.
“That means a lot because there was no chance that I was going to make it,” she said, candidly adding, “I am in the 30th percentile of this disease because I’m in my fourth year of symptoms — and I don’t plan on being here for my fifth.” The decline in her speech and the difficulty in her breathing grow more evident the longer she speaks.
But the strength of spirit that has resulted in what will be lasting change for the better for future ALS patients is what drives her to keep fighting day after day.
“I am completely unafraid of my next assignment because if I can do this, I can do anything,” Morris said. “I told [my family] that’s when they can start their grieving process, but we’re going to take this to the bitter end.”