We are riding in the Napa Valley Ride to Defeat ALS in memory of our friend, Sandy Morris, who passed away on August 28, 2022. Sandy was kind, fun, funny, fearless, and an amazing mother, wife, daughter, and friend. After being diagnosed with ALS in January 2018, at the age of 51, Sandy became a fierce ALS activist, advocating tirelessly for the ALS community.

Below are excerpts from Inaugural Rebecca Luker Courage Award of Recognition: Sandy Morris. (May 16, 2022). https://www.targetals.org/2022/05/16/naugural-rebecca-luker-courage-award-of-recognition-sandy-morris/:

Sandy’s involvement in the ALS community spanned far beyond being diagnosed with the disease. She spent the years between her diagnosis and her passing working tirelessly to leave the state of ALS in a better place. Her “can do” and “why not” attitudes contributed to collaborative improvements in patient advocacy, research, policies, and drug trials."

"Before her passing, Sandy served 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.

Sandy’s advocacy in the ALS community was far-reaching. She and her family 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 was one of Sandy’s proudest achievements.

Sandy continuously fought for legislation related to rights for ALS patients. One of her final projects was working to reform California’s medical aid in dying (MAID) laws. She had a lawsuit with the state of California alleging the current MAID laws violated the Americans with Disabilities Act.

To learn more about our amazing friend, Sandy, and all the work she did on behalf of the ALS community, see the following links:

Medical Hero Spotlight: Sandy Morris, ALS Advocate. (February 13, 2020). https://www.ciscrp.org/medical-hero-spotlight-sandy-morris-als-advocate/

When Aid-in-Dying Means You Have got Go Before You're Ready. (August 29, 2021). https://www.mercurynews.com/2021/08/29/when-the-aid-in-dying-law-leaves-you-out/

A Force Named Sandy. (August 31, 2021). https://www.moonshineink.com/mountain-life/a-force-named-sandy/

A Fight to Die. (December 17, 2021). https://www.bloomberg.com/news/features/2021-12-17/death-with-dignity-right-to-die-laws-leave-patients-with-impossible-choice

Sandy Morris: Striving to Leave ALS in a Better Place. (April 6, 2022). https://www.als.net/news/sandy-morris-leaving-als-in-a-better-place/

The Morris ALS Principles: A Model for Empowering All Disease Communities. (July 27, 2022). https://www.statnews.com/2022/07/27/the-morris-als-principles-a-model-for-empowering-all-disease-communities/

Meet Sandy Morris, the ALS Heroine Hardly Anybody Knows. (September 1, 2022). https://www.thenation.com/article/activism/fauci-sandy-morris-als-nih/