Category: Ventilator

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

Every Breath You Take

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"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

The 4th of July – ALS Style!

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This is a photo I took on our cross-country road trip just before we crossed the Mississippi River. Ever since we adopted dogs, I haven't been a fan of fireworks. They terrified Malka, our dog who passed away on September 26th, which was surprising because she was a fierce protector. She used to huddle with … Continue reading The 4th of July – ALS Style!