To honor the life and legacy of Broadway legend Rebecca Luker, who passed from ALS in December 2020, the Target ALS Rebecca Luker Courage Award is given to those who have demonstrated a courageous spirit and made a positive impact on the ALS community. The awards are presented in partnership with Mitsubishi Tanabe Pharma Corporation. A selection committee made up of notable Broadway performers and ALS researchers reviewed the nominees for the award based on predetermined selection criteria, including their innovation, collaboration, impact, and reach within the ALS community.
Sandy Morris was diagnosed with ALS on January 6, 2018, and that day marked the beginning of her admirable fight for all people affected by ALS.
“Sandy is the Swiss Army knife of ALS advocacy and values,” says Jan Mattingly, Sandy’s friend and fellow ALS advocate.
Sandy’s involvement in the ALS community spans far beyond being diagnosed with the disease. She has spent the years since her diagnosis working tirelessly to leave the state of ALS in a better place. Her “can do” and “why not” attitudes have contributed to collaborative improvements in patient advocacy, research, policies, and drug trials.
Developing the Morris ALS Principles
Sandy helped develop the Morris ALS Principles for the nonprofit, I AM ALS. These principles empower those diagnosed with ALS to take ownership of their diagnosis and work toward a cure with faster, more equitable, and more humane tactics.
The Morris ALS Principles are:
- We will protect our intellectual, physical, and financial dignity.
- We will be global stewards of our disease and respected partners in the science of treatments and cures.
- We will act as trusted peers with clinicians, researchers, and policy-makers.
- We will fight for equity in decision-making.
- We will lead an end to ALS/MND.
These principles have guided Sandy’s own battle with ALS. When discussing her diagnosis, she emphasizes demanding a seat at the table before decisions are made in drug trial design, research, healthcare policy, or anything else affecting her care. All of this is summed up in her slogan: There will be nothing about us, without us.
Creating Standards for ALS Patient-Centric Trials
Sandy currently serves as the chair of the Clinical Trials Team at I AM ALS. This team works directly with researchers, government agencies, and drug sponsors to ensure access, efficiency, and humaneness of ALS therapy development and approval. They also collect and distribute information regarding clinical trials and the latest research to the ALS community.
One of the biggest accomplishments of the Clinical Trials Team was the creation of the Patient-Centric Trial Design (PaCTD) rating system. This 5-star rating system evaluates trials based on certain design elements in three key areas: optimizing access to investigational therapies, advancing science quickly, and being patient-friendly.
Already, the PaCTD has been used to evaluate over 10 trials.
ALS Advocacy From California to Washington, DC
Sandy’s advocacy in the ALS community is far-reaching. She and her family have traveled to Washington, DC several times to meet with members of Congress about the urgent need for expanded access program funding. In part because of her efforts, the Accelerating Access to Critical Therapies for ALS Act (ACT for ALS) gained impressive traction and support.
In fact, the ACT ultimately garnered support from representatives on both sides of the political spectrum and passed unanimously on December 16, 2021. It was signed into law by President Biden on December 23, 2021, and its passage is one of Sandy’s proudest achievements.
Sandy has continued to fight for legislation related to rights for ALS patients. Her most recent project is working to reform California’s medical aid in dying (MAID) laws. She has an active lawsuit with the state of California alleging the current MAID laws violate the Americans with Disabilities Act.
Warrior, Advocate, Disrupter of Norms
Sandy has a broad network of researchers, pharma, regulators, neurologists, and patients/advocates. Her approach is unique in that it brings people together to establish new ways of collaborating to infuse patient and caregiver perspectives.
Her willingness to participate in clinical trials and take experimental drugs or placebos to move research along is admirable. Even now, with very limited physical ability, Sandy remains unstoppable at providing encouragement, support, and practical ideas to those she engages with.
“I do not want you to focus solely on making me more comfortable while I die. I would greatly prefer that you join me in my fight to live,” Sandy says.
Sandy greatly admired Rebecca Luker and we are proud to recognize her with this award.
This article is based on the incredible Courage Award nomination submitted on behalf of Sandy Morris by her friends and fellow ALS advocates, Jan Mattingly and Loren Beth McCormac.
