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: Health
On My Husband’s 37th Birthday
"Nothing prepared me for the privilege of being yours." - Sleeping at Last, "Turning Page"2 What you have to understand about the way I love Evan is that I am desperate for him. I can't shut up about him, and I don't want to. People say that the sign of a strong relationship is that … Continue reading On My Husband’s 37th Birthday
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?
My California Kitchen
Photo by Ella Olsson on Pexels.com This piece is about the last summer I could eat before losing the ability to chew and going on a feeding tube. Summer in Amber We held that whole summerIn our strawberry sticky hands,Trapped it in our tiny kitchenWhere sunbeams tangled with our legsAround too much furniture,Each piece an … Continue reading My California Kitchen
Every Breath You Take
"Every breath you take just proves how blessed you really are." - John Landry "This is Rachel Doboga's ventilator just after starting the nebulizer, and her oxygen is dropping to 95, now 93," Evan says, holding his phone up to film my ventilator readings. He stops filming and turns off the nebulizer. "My head is … Continue reading Every Breath You Take
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…
I don’t want to marry Edgar Allan Poe!
By Rachel Doboga Photo by Tyler Quiring on Unsplash Alright, here's the scoop. In early March, we knew one bacteria had colonized my lungs, meaning it will never go away. We just have to manage it with hour-long nebulizer / breathing treatment sessions in the morning and evening, and I have to do regular tests. … Continue reading I don’t want to marry Edgar Allan Poe!
On the Other Hand
2 It can be hard to "live my truth." Just because I have had a revelation or realization does not mean I can instantly incorporate it into my lifestyle. Especially because my hope just got a kick in the teeth. The latest bump in my pump did not work. This means more time on oral … Continue reading On the Other Hand
The Sun’ll Come Out April 19th
3 I haven't written a lot about the problem that has rendered me bedbound for quite a few months now. You may think you understand the severity of the situation. However, what you know is the tip of an iceberg that you soon discover is actually the edge of a glacier that is moving inevitably … Continue reading The Sun’ll Come Out April 19th
Draw on the Magic of New Years to Improve Your Health (Even if You Have ALS)
2 3 I have never really been one to get excited about New Years. Early on, my mom instilled in me a lasting fear of the hordes of drunk drivers careening about all night. I am now 30 years old, and to this day, I have never been to a New Years Eve party I … Continue reading Draw on the Magic of New Years to Improve Your Health (Even if You Have ALS)
How I Live Now: Life With ALS 