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 research
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!
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?
3 Things to Be Grateful for This Thanksgiving If You Have ALS
3 2 Those of us living with ALS or loving someone who has it are gratitude experts. Don't misunderstand me. We have our dark, bitter moments. As we catalogue our blessings - the precious time we have had on earth, our remaining abilities - we inevitably think about the other side of the coin. Yes, … Continue reading 3 Things to Be Grateful for This Thanksgiving If You Have ALS
Unabridged: “Is Your Doctor Hurting Your Mental Health? Why You Need an Emotionally Intelligent Doctor and How to Find One”
3 3 2 If you are anything like me, you do a little research before choosing a doctor. Patients can easily learn about the traditional aspects of their doctor's qualifications, such as the college they attended, years practicing, and awards earned, with a simple Internet search. However, it's quite a bit harder to get a … Continue reading Unabridged: “Is Your Doctor Hurting Your Mental Health? Why You Need an Emotionally Intelligent Doctor and How to Find One”
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
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
How I Live Now: Life With ALS 