AKNate is on a very distinguished roadAKNate is on a very distinguished road

AKNate AKNate is offline

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Visitor Messages

Showing Visitor Messages 1 to 7 of 7
  1. AngeT
    09-28-2017 03:39 AM - permalink
    AngeT
    Hi AKNate, I am new to this forum, as of about 10 minutes ago actually!

    Let me introduce myself. My name is Ange, I am from Sydney and my sister was diagnosed 12 months ago with Bulbar Onset MND. I can see in one of the threads you have been to Japan to have treatment with Edaravone. As it is still not approved by the TGA, we are now investigating importing it ourselves.

    My sister is being treated by Professor Matthew Kiernan and I am just waiting for them to come back with some information on what we do to access it.

    Anyway, I wanted to reach out and at least have a conversation with someone who has used the drug and the results.

    Many thanks for you support.

    Warm Regards,

    Ange
  2. Bestfriendstilltheend
    06-04-2017 09:41 AM - permalink
    Bestfriendstilltheend
    Hello AKNate,

    Hubby was diagnosed on the 30th. Ive just seen your postd about your spouse's treatment in Japan and was wondering how things are going. Could I please get more info on everything that one would need to do to get tratment there? My email is ([I]email removed for privacy)[/I]
    Thank you kindly.
  3. patient
    05-21-2017 02:24 PM - permalink
    patient
    How can I send you an email? I am planning to go to Japan, but I have lots of questions.

    Thank you
  4. maggie1
    05-11-2017 04:33 AM - permalink
    maggie1
    Hi AKNate, I have been following your posts in the forum regarding Japan and I saw your post to get in touch for information. I would greatly appreciate it if you can email me at smagrabi1986@hotmail.com to have a chat as my father has ALS and we will happily come to Japan if needs be. Thank you so much
  5. Steven A Williams
    04-02-2017 01:22 AM - permalink
    Steven A Williams
    Hi AKNate,
    Sorry, I've just seen this. My email address is steven.a.williams@mac.com
    Please email me
    Thanks
    Steve
  6. DrFab
    03-05-2017 08:15 AM - permalink
    DrFab
    Or by mail ?
  7. DrFab
    03-05-2017 05:42 AM - permalink
    DrFab
    How can i send you message please ?

About Me

  • About AKNate
    What's your relationship with ALS/MND?
    I am a family member of someone with ALS/MND.
    If diagnosed, when was the diagnosis?
    10/2016
    City
    Sydney
    State or Province
    NSW
    Country
    AUS
    Biography
    My husband is diagnosed with SOD1 N65S in exon 3.

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  • Last Activity: Yesterday 11:46 PM
  • Join Date: 10-25-2016

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