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Tina Johnson

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@tinaj

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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 Profile picture of Tina JohnsonTina Johnson are now friends 3 months ago

  • Profile picture of Tina Johnson

    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

    • Profile picture of Amanda
      Amanda replied 3 months, 1 week ago

      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]

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 3 months, 1 week ago

      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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