With a heavy heart, we share the sad news that Lorene Lee, a beloved mother, wife, friend, and passionate ALS advocate, died on October 16, 2024.
It was in November 2009 that Lorene first noticed some strange symptoms. As a dental assistant, she relied on her hands to perform precise movements and she began having difficulties with the fine motor skills necessary for her work. “I was taking care of the dental instruments, and called my boss over to look at two of my fingers, which were moving by themselves,” she shared.
Lorene was diagnosed with ALS in June 2010. “I knew by the series of tests the doctors performed that I was due to hear some serious news. My husband, Tony, took my diagnosis the hardest, but he became my rock in this fight.” It was already a very difficult time for their family. Tony’s father and then his sister had died just before Lorene’s diagnosis. Tony and Lorene had assumed guardianship of his sixteen-year-old niece. “So, we had a lot on our plate,” Lorene said, “Talk about challenges.”
Lorene and Tony had met in 1982 and were married in 1985. They had two beautiful children, Andrea and Brian. Tony worked with the San Francisco Parks and Recreation Department for 35 years. As a family, they loved to travel the world, and as a couple, they worked at creating a loving, strong bond in their relationship.
“When I first met Tony, he helped me to blossom as a person,” shared Lorene. “There was always lots of love around our house, from the time the kids were toddlers, tearing around on their hot wheels, to then fast forward to prom night, and all the gatherings with family and friends in between.”
After her ALS diagnosis, Lorene and Tony connected with the ALS Network, then ALS Golden West, and found many care services resources and support, including the ALS clinics and centers, care management services, connection groups, and our equipment loan program. They also got involved in many community outreach events, including the Bay Area Peninsula Walk & Roll to Cure ALS, formerly the South Bay Walk to Defeat ALS.
Lorene faced her growing physical challenges with determination, positivity, and humor. She would often say that she wasn’t going to let ALS get in her way and continued to travel both near and far, from an Alaskan cruise to a baseball game in San Francisco. She and Tony came to understand the difficulties people with disabilities, especially wheelchair users, face in navigating public spaces. She was also willing to be very transparent about the challenges of living with the disease, especially after she lost the ability to speak.
“Communication is essential to so many aspects of life, and most of us take it for granted. Having ALS and not being able to speak is crazy. I have to pick out each letter for each word with my eyes to make the Tobii speech/eye gaze computer speak for me. In regular conversations, it’s hard because every word takes time. By the time I am finished, the conversation has changed. But…. It’s just the nature of the beast.”
“This is a horrible disease that robs you of things you take for granted, like walking, talking, eating, drinking, holding hands, kissing, hugging,” Tony shares. “But, that’s only one part. When you are caring for your loved one, it’s 24/7/365, It can wear you down mentally and physically.”
Over the years, Lorene had to adapt to the constant changes in her ability to move and communicate. With Tony’s help, they continued to be active with the ALS Network to help raise awareness and support for the ALS community. Lorene and Tony first participated in the 2012 South Bay Walk with their loved ones as “Lorene’s Team.” With Lorene being from the islands, they attended the 2013 Hawaii Walk in Honolulu. That same year, they came back to the South Bay Walk and continued to participate for many years to come. In addition to the Walks, they were frequent participants at Major League Baseball ALS Awareness events with the San Francisco Giants and Oakland Athletics as well as the ALS Network’s annual Champions for Cures and Care celebration.
As ambassadors for the ALS community, Lorene and Tony participated in a special event hosted by a biotech company, Cytokinetics, which focused on how ALS had impacted the lives of people affected by it and those who were researching it. Over 100 people were in attendance and had a chance to hear their story and ask questions.
“You remind us how important it is to stay positive and focus on the good around us. You are inspirational, and are our motivation to keep moving forward.” – Robert Blum, President & CEO, Cytokinetics
Then, in 2019, Lorene and Tony were featured in a national campaign, called, ”Voice Your Love,” whose goal was to raise awareness about one of ALS’s many devastating impacts: the loss of the ability to speak. The call to action was to recognize the importance of being able to say things like, “I love you,” to the people you care about, and to encourage family and friends of those living with ALS to speak out for their loved ones.
Lorene and Tony then shared their ALS story as a part of the National Family Caregivers Month and year-end campaigns to raise awareness and support for the ALS Network’s mission priorities in care, research, and advocacy. This included articles, interviews, commercials, and informational videos which in total were viewed by thousands of people around the United States, igniting a spark for people to take action.
Throughout her journey with ALS, Lorene and Tony continued their ALS advocacy efforts, expanding them to include other public awareness efforts locally in California as well as participating in a unique photo story of some of their daily life with ALS, many of which are featured on the ALS Network’s website and social media channels.
“We will share our ALS story with everyone who will listen. And people DO listen and care! Having ALS for so many years, I can tell you that it is a HELL of a ride of sadness and madness. One day, your voice might cease to exist, you might be in a wheelchair, and you cannot feed yourself. You can’t blow your nose. Running water upon your body or face will be something of the past. You can’t scratch your itch or get rid of that hair, irritating you, on your face. There is also a heavy emotional and financial toll on you and many who are close to you. Luckily we have the ALS Network fighting and advocating behind the scenes. And, like everything else, they need financial support to exist. This is truly important for those who will one day get this shocking ALS diagnosis. They are a huge helping hand that gives you a fighting chance,” said Lorene.
Although they have participated in many activities and events, Lorene and Tony truly dedicated themselves to the Walk & Roll to Cure ALS, and Lorene’s Team has been among the top fundraising teams each year. To date, they have raised over $250,000 in support of the mission of the ALS Network. Along with their family and friends, they would participate in person or watch online.
“I am so grateful for all the heroes in my life, including my beloved dog Hiro who always keeps me warm and makes me smile! I especially want to publicly say thanks to my two children, Andrea and Brian, my family and caregivers and of course, Tony. It takes a village to fight ALS, and I couldn’t do this without the support of the community around me.” – Lorene Lee
In August 2024, Lorene’s condition began to deteriorate rapidly. For the first time, she and her family were not able to travel to their beloved Bay Area Walk & Roll, even though it was just a few miles from their home. With the help of her caregivers, Lorene was able to watch the live stream and experience our well wishes during the program. Just 11 days later, Lorene died after a 14-year journey with ALS.
The ALS Network is grateful for Lorene’s deep commitment to our mission and many contributions in support of the ALS community we serve. Her story has inspired and touched the lives and hearts of thousands of people and has become central to the ALS Network. We send our deepest condolences to Tony, Andrea, and Brian, along with their family and loved ones. Lorene’s love and joy will live on and inspire our efforts in support of ALS care and research. If you would like to donate in memory of Lorene, please donate here.