I knew I wanted to do an episode about HOPE, heading into the new year. On December 8th we lost our friend Scott Smith and quickly I knew his words were all I needed to share.
"Please take my baton & run faster & farther." That was Sandy Morris's last twitter message to her fellow advocates fighting for ALS cures with her. Sandy Morris passed away on August 28, 2022 at age 56 from ALS. In this episode I chat with her daughter Kylan as she shares what it was like losing her mom at such a young age. Just a few months after losing her mama, Kylan was eager to share what she learned from her mom, her choice of dying with dignity, the final days together and the work that Kylan is doing to continue making a difference with those living with ALS. Kylan describes how her mama helped move mountains in the ALS community, vowing to leave the disease space better than she was forced into it so that future ALS families could benefit. Sandy was a fierce ALS advocate who was highly respected and admired for her many contributions. Even in her final days, Sandy started a new ALS Clinic Survey project with Pat Dolan and his Geospatial Hub team. Kylan talks about how she jumped in to take her mom's baton and complete this project. The ALS Clinic Survey is now available and provides a summary of the type and quality of care at each ALS clinic in the U.S. based on personal experiences of persons living with ALS. I loved hearing about how Kylan is honoring her mama, Sandy. As a mom, I was overwhelmed with witnessing the positive impact that Sandy has had on her young daughter. It's really made me pause. This is a beautiful conversation. Excited for you to hear and share with another mama.