Spotlight on… Erin Taylor

Erin Taylor was born in Whittier, California, in 1999. When she was 17, she moved to Salt Lake City, Utah, to attend college. Always creative and hard working, she juggled numerous jobs while she was in college. After earning her degree in Botany Sciences, she began her career as a field technician in the remote high desert of the Great Basin, gathering and reporting data of invasive plant species in areas affected by wildfires. Her dream was to ultimately become a full fledged botanist specializing in environmental conservation, alongside her love for creativity through her interest in tattoo arts.

While she was in college, Erin first started feeling weakness in her hands, which she attributed to being too engrossed in school and neglecting her workout routine. A few months later, she started noticing her speech sounded different, and that her whole body began to feel stiff, both of which she continued to blame on a lack of physical exercise. Upon her mother’s insistence, and around a year after her first symptoms, in August 2023, Erin was diagnosed with sporadic limb onset ALS at the age of 23. The news came as a shock to Erin and her family, especially considering her age.

After a terrible car accident, Erin’s symptoms progressed to the point where she could no longer work. Determined to share her story and raise ALS awareness, she now dedicates her time online, educating others about ALS through her Instagram account, @unsteadyandready. Using her platform, she highlights that even young people can get ALS without having a genetic disposition.

In addition, Erin works with the Scott-Morgan Foundation on designing global tech solutions for assistive communication devices. Her work focuses on bringing everyone together in the assistive tech realm to develop a scalable and zero-barrier worldwide solution for people who have lost the ability to speak. Erin is proud of her work, and has championed the idea of having a Bill of Rights for all people who use an AI Avatar for communication purposes.

“Although it feels like you are the only one in the world having to deal with this disease, you are not alone. Start reaching out online and find accounts of other people that have ALS, start networking with them, share ideas, gain knowledge. Knowing that others across the world are going through the exact same thing feels normalizing. Also, to find ways to reconnect with yourself in a meaningful way. I find happiness every morning by facing the sun, placing my feet on the earth, closing my eyes, and listening to the birdsongs.” – Erin Taylor

Erin has been transitioning from her dream of becoming a botanist to becoming an ALS advocate. She uses eye-gaze technology and most recently her personal AI Avatar to not only attend the Consumer Electronics Show, but to speak at the Lenovo Tech World Conference. Most recently, she appeared before the Parliament of Australia as part of the Zero Project Conference, highlighting innovation for international disability inclusion in 2025.

In 2024, Erin was a featured speaker at the Los Angeles Walk & Roll to Cure ALS, where she used her AI-recreated digital voice to share her story:

“The one thing that social media is good for is for connecting the world together. The ALS community is no different. We are there for each other. While we all impatiently wait on the edge for a cure, the community sees you, supports you, and can relate to your struggle. It has been my goal to spread awareness about this disease to all demographics–with or without ALS. Because more people need to know more about it. Guess what? Young hot people can get ALS too. It all starts with awareness, and ends with a cure.” – Erin Taylor

Lily Taylor, Erin’s mother, emphasizes the importance of raising ALS awareness: 

“Learning about this disease helps, even if it’s just a little. By spreading the word that ALS exists, we can get attention and hopefully get more funding so a cure can be found.” – Lily Taylor

A special thanks to Erin Taylor and her loved ones for their support of the ALS Network’s mission and their efforts as ALS fundraisers and advocates.