Danville Teen Launches ALS Care Kit, Volunteer Program Inspired By Family Loss

DANVILLE, CA — Carson Lee, a junior at De La Salle High School in Concord, said that his sister-in-law Alyssa was “one of the most remarkable people I have ever known.”

She taught English in Thailand, lived on a goat farm in Senegal, and worked on a hazelnut farm in Spain and a sheep farm in Wales. She eventually became program director at the San Francisco Boys and Girls Club.

“She had a way of making me and everyone around her feel heard and special. She was my biggest cheerleader,” he said.

But at just 29, she was diagnosed with ALS, a fatal neurological disorder. As Carson watched the enormous toll it took on Alyssa and his brother, he decided to find a way to help others suffering from the painful illness.

In 2023, Carson and his older brother Jake decided to launch ALS Care Kits, which provides necessary items like resistance bands and button hooks to people suffering from ALS. He said he was inspired to assemble the care kits after watching Alyssa struggle to complete everyday tasks as the ALS progressed. Working with Alyssa and others living with ALS, Carson and Jake reached out to the wider Danville community to help donate items like long-handled shoehorns, extra long bendable straws, ball strengtheners, long-handled foam utensil holders, and more.

Carson, his golf teammates, and local Boy Scouts helped distribute flyers, gather items, and assemble kits. The kits were distributed at the East Bay Walk and Roll to Cure ALS.

“The response from neighbors was overwhelming. This past December, thanks to the generous community of donations, we created over $2,000 worth of Care Kit items,” Carson said.

But Carson didn’t stop there. He thought again of Alyssa and his brother, who struggled with the endless physical demands presented by ALS. Household projects pile up, and caregiving costs are largely uncovered by insurance. In January, he partnered with the ALS Network to recruit volunteers to help with the every-day chores of families affected by ALS. Families were initially more cautious than he’d expected, but he hopes to change that with more publicity.

“I want every family in the ALS community to know that the ALS Network and my team of volunteers work hard and want to help. We also have ALS Network representation and parent volunteers there with us,” he said.

Carson eventually began working with Karen, a board member of the ALS Network living with ALS in Walnut Creek. He helped her with her chores, but also formed a deep and powerful friendship.

“What I remember most is not the work, it is Karen. She shared stories and memories from her life with us, she laughed, and sent us home with San Francisco 49er gear she wanted us to have. We went there to give and we left having received a sense of fulfillment and joy of having the honor to spend time with her, hear about her incredible life, and help,” he said.

Moving forward, Carson wants to make ALS Days of Service an expanded and fully sustainable program. He hopes to start a foundation before leaving for college that could help spread the initiative far and wide.

“There is something fulfilling about starting something from a place of personal grief and watching it grow into something sustainable that other people want to be a part of and carry forward.”

To get involved, visit alsnetwork.org.

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