@michaelp-londrigan
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Michael L. started the topic Drug Trial in the forum Research Topics 12 months ago
Hi All,
Wanted to share with the community that I have just been notified that the trial I participated in for 18 months then went to the open label for 8 months has been cancelled. The drug was Arimoclomol and sponsored by Orphazyne. I participated through the Hospital for Special Surgery in NYC. The drug failed to meet the endpoints es…[Read more]
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Michael L. changed their profile picture 1 year, 4 months ago
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Michael L. replied to the topic Vaccine on the horizon in the forum Coronavirus (COVID-19) and ALS 1 year, 4 months ago
My wife and I are getting it as soon as it is offered!
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Michael L. replied to the topic Getting involved in clinical trials in the forum Living With ALS 1 year, 6 months ago
Hi Chuck,
Have you looked into the Healy Platform out of Boston. I am in a group and one of the participants was recently accepted into a trial with barely meeting 50% lung capacity. They are calling it the Healy Platform and are trialing multiple treatments at the same time.
I have participated in a trial with Hospital for Special Surgery i…[Read more]
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Michael L. became a registered member 1 year, 6 months ago
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Hello Michael,
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. You can also search for past topics or…[Read more]
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Hello Michael, 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 l…[Read more]
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Thank you for updating us Michael.