Category: Drug Trial

My Battle Against Bitterness

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My application for the ALS drug Relyvrio was shot down by insurance a few days ago. There is no appeal process because patients who are on ventilators are not included in clinical trials. That means insurance can say it doesn't benefit us. It was very hard to get that news. They say I'm in the … Continue reading My Battle Against Bitterness

My FDA Advisory Committee NurOwn Statement

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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

Rejoice, for Yesterday a Miracle Happened!

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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!

3 Things to Be Grateful for This Thanksgiving If You Have ALS

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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