Supporters Like You

Meet Carson Lee, a junior at De La Salle High School, Diablo, CA resident, and brother-in-law to Alyssa Jeswald-Lee, who lived with ALS for four years.

When Alyssa was diagnosed with ALS in 2018, her husband Taylor and their family experienced firsthand the physical, emotional, and financial toll of the disease. Watching his brother and sister-in-law walk together through thick and thin, Carson found inspiration in their love and commitment.

Over the next few years, the Lee family connected with the ALS Network and raised awareness through fundraising efforts, Walk & Roll to Cure ALS events, and have become key members & speakers at the East Bay Walk & Roll to Cure ALS. Following her passing in 2022, Carson channeled his grief into action, determined to ease the burden for other families facing the same challenges.

In 2023, Carson and his brother, Jake, launched ALS Care Kits, providing essential items to individuals living with ALS and their caregivers. This past December, thanks to Diablo and Danville residents’ generous donations, Carson delivered over 2,000 items at an ALS Network walk, including resistance bands, long-handled shoehorns, and extra-long bendable straws – simple tools that make daily tasks more manageable for those with limited mobility.

Carson explains, “Sometimes, the smallest things make the biggest difference – a tool someone didn’t know existed, an errand that gets run, a household project that finally gets done. Those things may seem small from the outside, but to a caregiver running on empty, they can feel like everything. I hope I can provide a little relief to someone who needs it.”

This January, Carson launched ALS Days of Service, partnering with the ALS Network to find families who need hands-on help. With caregiving costs largely uncovered by insurance and time consumed by daily caregiving needs, routine projects like household projects and yard work often go undone.

Earlier this March, Carson recruited several of his golf & Eagle Scout peers – Erin, Jen, Logan, Cade, Harrison, Carson, Matthew, Henry, and Joe – to assist Karen Sutton, an ALS Network board member living with ALS, at her home in Walnut Creek. Together, the group helped clean out her storage unit, carried boxes to her home, built shelving, and organized her belongings.

Along the way, they heard stories and memories from Karen’s life, and even went home with some San Francisco 49ers gear she gifted them. Leaving the experience fulfilled and renewed in his conviction, Carson has since started outlining his next project, and plans to assist Karen once again.

With gratitude, Karen shared, “I would like to extend my heartfelt thanks to seven incredible young gentlemen who generously volunteered their time to help a person living with ALS. Your time, hard work, and servant hearts made a real and lasting difference. Acts like these remind us that community, leadership, and empathy are alive and well. We are deeply grateful for each of you.”

For his outstanding community service, spirit, and ambassadorship in support of the ALS community – work inspired by a deeply personal loss – Carson was awarded a plaque at the East Bay Walk.

To encourage others to join him in this work, Carson said, “There are heroes everywhere in the ALS community, and there are silver linings you never expect to find. There is something remarkable about people who face something that is hard and still choose joy. To anyone considering getting involved — do it. I promise you will leave more inspired than before.”

The Ellis family lived a fond life as a family of three: Stephen (Steve), Scean, and their daughter, Kennedy. Based in Los Angeles, California, Steve and Scean found work in their passions of teaching and digital media, respectively, and inspired their daughter to follow her dreams. Growing up, Steve and Kennedy shared a bond through sports, often spending time watching games together; eventually, Kennedy channeled that bond into a career in social impact within the women’s professional sports industry, doing community engagement and social impact work.

“He had a passion for teaching, nurturing, and helping his students. He loved his students whether it was here or any of the other schools that he taught at,” Scean shares.

In 2022, Steve started to notice small differences in his motor function, particularly with his foot dropping. Wearing braces helped him walk, but his symptoms continued to progress. During a fall golf game, Steve found himself exhausted after 12 holes and truly felt his motor deterioration. After going to numerous doctors over the span of six months, Steve received his ALS diagnosis from Dr. Abi at the Cedars-Sinai ALS clinic in 2023.

Steve’s diagnosis came as a shock for his entire family. Kennedy, recalling the 2014 ALS Ice Bucket Challenge, was determined to learn more about the disease outside of her brief involvement in the challenge while she was in college. Upon learning of the dreaded nature of ALS, she found herself rattled, with “incurable” and “two-year life expectancy” circling her mind.

After his diagnosis, Kennedy & Scean did their best to focus on making memories with Steve despite their fears, wanting to stay connected with him even after he passed. When they were introduced to the ALS Network, the Ellis family found love and support in their community through monthly Connection Groups and the Los Angeles Walk & Roll to Cure ALS.

Before he passed, Steve spoke on his journey in several ways, including ALS Awareness Month in 2024 and a documentary, A Journey Through ALS, directed by Curtis Burke and produced by Uncovered Legacy. Steve’s continuous involvement highlighted his dedication to raising ALS awareness and community engagement, especially in the Black community. In May 2024, Steve lost his battle with ALS.

Each year, the Ellis family continues to attend the Los Angeles Walk, where their team, Team Big Smoke, raises ALS awareness and support in memory of Steve. They also set up a tribute fund to directly support the ALS Network’s care services for the immediate needs of families like theirs who have been affected by ALS.

Kennedy reflects on her father’s journey:  “Seeing my dad go up against ALS was by far the most incredible thing I’ve seen him do. He fought for a very long time and, while I was heartbroken to see him go, I was grateful to know he was able to go out on his terms and finally rest. And it’s that gratitude I’m left with, not the fear of facing the rest of my life without him or the anger that he’s gone far too soon – but the gratefulness that I knew him at all.”

Christopher’s brother and sister recount his beautiful life:

Christopher Noel Ryan was born in the former British colony of Jesselton, North Borneo (now known as Kota Kinabalu, Sabah, East Malaysia) in December 1958. He was the fifth among seven siblings, having three sisters and three brothers. His early education was in Sabah and later in Bangalore, India where he got his first degree. He eventually returned to Malaysia.

He taught mathematics for a few years at a private college in Kuala Lumpur before going to the US in 1988 to continue his studies focusing on computer science. After attaining his post-graduate degree, he worked in Illinois, Nevada, and California over the following decades as a computer engineer, achieving his goals with characteristic determination and hard work. Christopher loved living in California. He bought a house in Santa Cruz which became his home.

Christopher loved travel, meeting peole, adventure, sports, and outdoor activities. His absolute passion was running daily, which he did with much joy and determination in the beautiful area around his home in Santa Cruz. Forever challenging himself, he took pilot training and learned to fly, para-glide and scuba dive.

Family, friendship, honesty, and integrity were important things to him throughout his life. Christopher was thoughtful and generous and he went out of his way to help his family, friends, and strangers. He unceasingly supported the people of whom he knew they were in need, his student friends in Carbondale, his friends in the Bay Area and, of course, his family. Even in his last wishes he thought of being helpful to others.

In 2018-2019 Christopher discovered he was suffering from ALS and began utilizing the Care Services with ALS Network. With his typical curiosity about all things in life, he systematically researched the available science behind the disease. He pragmatically and methodically organized his life around this new reality, informing all of us about the diagnosis and making plans for the remaining years of his life.

Christopher was very much attached to the US which had become home to him; however, while he was still able to walk, he wished to pay a last visit to his hometown, Kota Kinabalu, and to spend time with his family there. With some trepidation and with great courage he set out from Santa Cruz in mid-2021. His condition deteriorated during this time, and he died in his hometown on 13 December 2022, three days before what would have been his 64th birthday. Christopher was true to himself and lived his life with courage and dignity right till the end. His legacy to us, his family, is one of compassion, kindness, empathy, and hard work.

Peter’s generosity was inspired by his own father’s ALS diagnosis in 1985, fueling his lifelong commitment to ALS research. Peter has always preferred to connect directly with the people who lead the programs he supports, and appreciates hands-on engagement with staff and volunteers, visits with researchers in the field, updates, and events hosted by the ALS Network.

As a former researcher himself, Peter understands challenges faced by scientists, which is why he has pledged sustained, multi-year support focused on scientific discovery. Peter has also included the ALS Network in his estate plan because he intends for his life and legacy to drive advancements in ALS therapy development — aiming for prevention, halting progression, and finding cures for ALS.

It is Peter’s strong belief in the effectiveness of the ALS Network’s integrated approach to accelerating scientific discovery and his experience with the organization that confirm his enthusiasm for powering the pioneering work of the ALS Network.