Spotlight on… the Ellis Family

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 Ellis

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.

“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.”

– Kennedy Ellis