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Gigi replied to the topic Any news from Tofersen phase III clinical trial? in the forum Research Topics 1 day, 12 hours ago
You are correct Phase III of the Biogen Tofersen Trial ended in July of this year. In April an extension of the Trial started for those patients who had already participated in the Trial, and wanted to participate, where everyone would now be getting Tofersen, even those previously receiving the placebo
In addition Biogen has now just started a…[Read more]
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Gigi replied to the topic AFOs: Are they worth it? in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 month, 4 weeks ago
I highly recommend AFO’s. I use them when I want to walk more than just around the house…walk in neighborhood, grocery shopping etc. My legs get far less tired and I can walk faster. Like some others I find them a little clumsy around the house. I also had to get over my ego and have found fun socks and shoes to make me feel better about t…[Read more]
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Jennifer Zink and
Gigi are now friends 3 months, 2 weeks ago
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Amanda and
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Gigi replied to the topic In Loving Memory of The Sifford's that had ALS in the forum In Loving Memory 3 months, 2 weeks ago
Amanda
Thank you for sharing your family’s story. I too have the SOD1 gene and am in a Clinical Trial. Amazingly noone else in my very large extended family at this time is showing any symptoms. Some have debated being tested due to new research in presymptomatic trials. I would love to reach out to you to talk if you would be willing but am…[Read more]
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Gigi became a registered member 5 months ago
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Hello Gigi,
Welcome to the forum! I am one of the forum moderators, as well as a person who is 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 discussions…[Read more]
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Hello Gigi, 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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