Dear Drs. Califf and Marks, I am a young woman living with ALS, and I am writing in strong support of the approval of the ALS treatment debamestrocel, which has proven to be both safe and effective in clinical trials. ALS is a brutal enemy. This equal opportunity killer destroys the nerves that allow us … Continue reading My FDA Advisory Committee NurOwn Statement
Category: Voice
Can AI Voice Cloning Be Used For Good?
Photo by Polina Kovaleva on Pexels.com I'm pleased to present the link to the story for which I was recently interviewed, "Can AI Voice Cloning Be Used For Good?" by Kaleef Starks, Mark Armendariz-Gonzales, and Clera Rodrigues. The interview focused on the changes ALS has caused in my communication, as well as my experience with … Continue reading Can AI Voice Cloning Be Used For Good?
Eight Years In…
Photo by Hakan Erenler on Pexels.com Eight years ago on June 8th, I was diagnosed with ALS. At diagnosis, I was given 2 - 5 years to live. We all are. I was just 28 years old. After my diagnosis, I immediately said goodbye because that's what I was told to do. I was told … Continue reading Eight Years In…
Getting Back My Voice?
3 2 This news is both moving and a profound reason for hope! When I was diagnosed three years ago, voice banking would have taken eight hours, and I simply didn't have the strength - or money - for such an endeavor. As you will see in the video,141136 this company was able to recreate … Continue reading Getting Back My Voice?
Summer Dreams
4 Something about spending time on a covered porch always leads me reminiscing and daydreaming. As the rain clears to make room for the summer sun, I spend hours out there, watching my dogs play and letting my mind float on the afternoon breeze, I remember, and I plan. This beautiful weather makes me miss … Continue reading Summer Dreams
Three Dreams and A Dragon
When I was thirteen, I bought a small, blue, canvas-bound book whose title, scrawled in loopy silver script, read, "The Interpretation of Dreams." I purchased it because every morning, I awoke with vivid memories of three, sometimes four, dreams. About half of them were nightmares, but they didn't trouble me as much as what I … Continue reading Three Dreams and A Dragon
Learning Helplessness
Today while out on a (st)roll, I witnessed a toddler run out into the street in front of a car. I was unable to do what every molecule in me demanded: race to the boy and snatch him up out of harm's way. I couldn't even scream in horror or point and shout so a … Continue reading Learning Helplessness
A Lesson on Joy
In the movie adaptation of my life, the climactic scene would go like this: the camera slowly sweeps up to where I am snuggling into a warm plaid blanket on a rustic porch. The sun peeks out from where it slept behind the mountain range. The soft light on my face shows I’m at peace. … Continue reading A Lesson on Joy
Protected: The Little Mermaid Lied
There is no excerpt because this is a protected post.
Cathedrals: On Losing My Voice
"In my mind I am eloquent; I can climb intricate scaffolds of words to reach the highest cathedral ceilings and paint my thoughts. But when I open my mouth, everything collapses.” ― Isaac Marion, Warm Bodies
How I Live Now: Life With ALS 