It is with heavy hearts that we share news of the passing of Dee Holden Norris, former ALS Network Advisory Trustee from 2011 to 2015. Dee had decades of involvement with every aspect of ALS/MND, both clinically and organizationally, at the local, national, and international levels, leaving behind a legacy of impact and change.
Born in Texas and a long-time California resident, Dee was an expert in ALS research, treatments, and the highest quality clinical care, and involved in various ALS advocacy efforts. Her career, built on the cornerstone principle of compassion to people with ALS, continues to serve as an inspiration and a beacon of hope to the entire ALS community.
Dee inaugurated many of the early nursing management, home care, and support programs for ALS, which are now accepted as standards for care, as well as educational, informational, and development programs. These efforts have been carried forward in the Forbes Norris ALS Research Center, which she helped direct with Dr. Robert Miller.
Offering her expertise, infectious personality, and deep compassion for others, Dee worked with her husband, the internationally-known pioneer in ALS research and clinical management, Dr. Forbes “Ted” Norris, to help steer ALS care and research into new territories. The pair’s efforts included founding the first ALS Association Certified Center of Excellence in the country. They were innovators and mavericks, both individually and as a team.
In addition to Dee’s direct contributions to care and ALS research, she actively participated in several ALS Network events supporting those affected by the disease. These included Champions for Cures and Care, the Napa Valley Ride, Walk & Roll to Cure ALS, and the Day of Remembrance.
During the 2011 Essey Award presentations, the ALS Network presented Dee with a Lifetime Achievement Award for her commitment and passion to finding a cure for ALS. She dedicated her life to providing people with ALS exemplary treatment and care, access to services, and opportunities to participate in ALS research.
“Dee would be the first to say that her worldwide reputation as a leader and pioneer in ALS care and research is due to those who have surrounded her. People who have worked with her know that’s only part of the story. She will be deeply missed in the ALS community, and her legacy lives on in the work of ALS clinicians and advocates around the world. We were lucky to know her and will forever be grateful to her.”
– Sheri Strahl, President & CEO, ALS Network
