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: ALS advocacy
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?
Rejoice, for Yesterday a Miracle Happened!
Photo by Pixabay on Pexels.com When I read the news, I immediately started sobbing. We were about to start trach care and Evan was holding all the materials, but as soon as he saw the first tear fall, he put it all down. "What happened? What's going on, honey?" I could hear the mounting panic … Continue reading Rejoice, for Yesterday a Miracle Happened!
The Surprising Reason I Need to See You Dump Ice Water on Your Head
For me, the Ice Bucket Challenge is not just a way to raise money for ALS research. It's not just about hope. The effect on me goes much deeper when I watch the videos. I know I have a vast support system that includes you, my dear readers. However, I can't see you read my … Continue reading The Surprising Reason I Need to See You Dump Ice Water on Your Head
On the Delivery of my CDC National ALS Conference Speech
This morning, my mom and dad attended the CDC National ALS Conference to deliver a speech I wrote. I had hoped to attend the conference myself and have my husband speak for me since my voice is almost completely lost. However, my ALS threw a few wrenches, a hammer, and a screwdriver in that plan. … Continue reading On the Delivery of my CDC National ALS Conference Speech
Watch My Speech at the CDC National ALS Conference!
3 3 My speech at the National ALS Conference on outreach is tomorrow ( Wednesday ) at 9:30 AM EST! Due to travel complications, I am not able to attend, so my mom will be giving the speech for me! You can watch the event live at this link: http://www.alsregistrymtg.com
Save Medicaid from Being Slashed!
The health care bill draft currently being reviewed by the Senate slashes Medicaid to the bone. If the bill is passed, 14 million of the most expensive beneficiaries - particularly, the elderly and disabled, including those suffering from ALS - will be kicked off Medicaid! Use the following text to write to or call your … Continue reading Save Medicaid from Being Slashed!
Help Launch Phase 2 of the “Save the National ALS Registry Campaign”!
3 WANTED! I am looking for people with experience canvassing for petition signatures. Phase 2 of my "Save the National ALS Registry Campaign" is to create and publish a guide that allows citizens to reach out to their neighbors and get signatures to send to representatives along with a letter explaining why we need them … Continue reading Help Launch Phase 2 of the “Save the National ALS Registry Campaign”!
Pacing Myself
3 I have always struggled to acknowledge and accept my limitations to the point that I often push myself far past them. From middle school through college, I participated in at least three extracurricular activities each year. OK, that's a lie. It was more like four or five. I was in a leadership position as … Continue reading Pacing Myself
“Extraordinary” Collaboration Brings Together Project MinE, Answer ALS and the New York Genome Center
3 9 Here's something to smile about! A big thank you to #TheALSAssociation for facilitating and helping fund this collaboration and countless other invaluable partnerships. In the shadow of Trump's attempt to defund the National ALS Registry, witnessing The ALS Association's commitment to streamlining research efforts to push us ever closer to a cure is … Continue reading “Extraordinary” Collaboration Brings Together Project MinE, Answer ALS and the New York Genome Center
How I Live Now: Life With ALS 