@jeep2017
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Fran posted a new activity comment 11 months, 2 weeks ago
I didn’t think so but you can always hope
Thank you for your prompt response too
Warm Regards
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Fran posted an update 11 months, 2 weeks ago
Good Evening
There is a YouTube blogger that muscular dystrophy and does injections of Spinraza for muscle atrophy. Has this been studied with ALS and does it slow the progression of the disease
Thank you in advance
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Fran posted a new activity comment 1 year ago
Happy NewYear Amanda
Thank you and I know I have to take this one day at a time
I have watched many people in my family die from cancer but never anything like this!
Growing up a neighbor had a neuromuscular disease but not ALS.
I wish there were more drugs to slow down the progression of the disease.
It is families like yours that will make…[Read more] -
Fran became a registered member 1 year, 1 month ago
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Hello Fran,
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 Fran, 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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Happy NewYear Amanda
Thank you and I know I have to take this one day at a time
I have watched many people in my family die from cancer but never anything like this!
Growing up a neighbor had a neuromuscular disease but not ALS.
I wish there were more drugs to slow down the progression of the disease.
It is families like yours that will make…[Read more]
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Hello Fran – – we have to be cautious about treatments that are used for other conditions. ALS is far different from MS: https://alsnewstoday.com/differences-between-als-and-ms/
Plus, consider the source… I would also be cautious about following the medical suggestion of a “YouTube blogger.” Spinraza is a new treatment for Spinal Muscular…[Read more]
I didn’t think so but you can always hope
Thank you for your prompt response too
Warm Regards