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  • 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
    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 (email removed for privacy)
    Thank you kindly.
    How can I send you an email? I am planning to go to Japan, but I have lots of questions.

    Thank you
    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 [email protected] to have a chat as my father has ALS and we will happily come to Japan if needs be. Thank you so much
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