Episode 16: Turning Pain into Purpose – An ALS Advocate’s Story

Sabrina Johnson lost her dad to ALS in 2019. In this episode, she shares how she turned her pain into purpose and became an ALS advocate. The journey to diagnosis was hard enough, but watching her dad battle a terminal disease forever changed her. After a lightbulb moment, she decided to turn her anger into ambition and became an advocate for patients and families with ALS. In 2021, she founded Sabrina Johnson Advocate LLC to provide support, resources, and guidance to others who are navigating life and loss with ALS.

Your Guests

Sabrina Johnson

Sabrina Johnson lost her father, her main man whom she calls Ton, to ALS in 2019. After watching her dad battle a terminal disease forever changed her, she began sharing her story and became an advocate for others in the ALS community. Sabrina founded Sabrina Johnson Advocate LLC in 2021, an advocacy initiative that provides support, resources, and guidance to individuals with ALS and their loved ones. She authored a guidebook to navigating ALS, Understanding ALS for the Average Ton, and a children’s book about the relationship between her father and her son, Breaker Breaker 1-9 Where’s My Little Man At. Sabrina is also the Chief Operating Officer of I-Ally, a one-stop-shop of support and services for family caregivers and their unique needs.

Connect with Sabrina:

Mindy Henderson

Mindy Henderson is the Editor-in-Chief of MDA’s Quest family of content and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, with her first book set to hit bookstores in Summer of 2022.

Connect with Mindy:

Disclaimer: No content on this site should ever be used as a substitute for direct medical advice from your doctor or other qualified clinician. 

Listen to this next

Episode 27 – The Changing Landscape of Neuromuscular Care

As new treatments, cutting edge research, and a better understanding of genetic sequencing and mutations…

Episode 26 – Catching Up with Bill Crossland

For our February Valentine’s Day Quest Podcast, we catch up with Bill Crossland, a writer,…

Episode 25 – New Year, New Mindset

We are excited to start a new year talking about new mindsets, especially when it…