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Tina Johnson replied to the topic Have you Applied for Access to Experimental Treatments??? in the forum Living With ALS 5 days, 13 hours ago
Hi,
I had my team start the application process end of December. Still nothing. I ask every so often for any updates and get the answer they haven’t heard anything. It’s so frustrating. All I do is hope and pray everyday.
Tina
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Tina Johnson replied to the topic Toferson in the forum Research Topics 2 months, 2 weeks ago
Hi John,
Would you be able to let me know what the supplements you take? Either on here or email?
My email is [email protected]
Thank you!
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Tina Johnson replied to the topic Toferson in the forum Research Topics 2 months, 3 weeks ago
Thank You, John
Sounds awesome what it has done for you.
I am 40 and walking with a cane, I can’t lift up my left arm very high anymore and now it’s starting in my right. I am also doing PT and exercising at home as much as possible.
I talked to my Neurologist and they put me on top of the list for Tofersen. I am just praying I am able to get…[Read more]
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Amanda and
Tina Johnson are now friends 3 months ago
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Tina Johnson replied to the topic Toferson in the forum Research Topics 3 months ago
Hi Amanda,
I’m also interested in the tofersen treatment. Can I ask you what state you live in? Also where are you being treated at?
Tina
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Tina Johnson became a registered member 3 months, 1 week ago
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Hi Tina,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!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 h…[Read more]
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Hello Tina,
Welcome to the forum! I am one of the forum moderators as well as a person 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 by…[Read more]
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