@stevehoffman
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Dagmar Munn and
Steve Hoffman are now friends 2 years ago
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Steve Hoffman replied to the topic ALS and the 2020 Elections in the forum ALS Awareness and Advocacy 2 years ago
President Trump signed “Right to Try” legislation to give terminally ill patients the ability to access experimental drugs that have not been approval by the FDA. But since the drug companies have the ability to deny access to their experimental drugs, I’m not sure how many patients have benefited from the new law.
I am grateful President Trump…[Read more]
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Steve Hoffman started the topic Do Radicava Side-Effects Go Away? in the forum Diagnosis Information and General Questions 2 years, 2 months ago
As I sit receiving my 24<sup>th</sup> Radicava infusion, I ask myself whether there is any benefit continuing treatment. I’ve experienced a significant gait disturbance over the last ten infusions. The rate and degree of decline is scary compared to pre-Radicava decline overall.
There is so little published about Radicava online and when s…[Read more]
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Steve Hoffman became a registered member 2 years, 3 months ago
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Hello Steve,
Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or even…[Read more]
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Hello Steve, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
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