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Thread: Reasons for optimism

  1. #1
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    Red face Reasons for optimism

    Hi All

    As i sit around the house, which i do a lot, i can't help but feel my life has seen the best years even though i am 41yrs old and my partner has just given birth to our second child , a little girl named Millie.

    Then i realise how much effort people around the world are putting in to find treatments and ultimately a cure.

    I now see i can have reasons for optimism, I am going to fight this condition and keep my strength to see my little girls grow up.

    The next 2 yrs are going to be monumental for MND suffers as we are on the brink of several treatment options becoming a reality .

    none more than Edavarone, Masitinib and Tirasemtiv which are now knocking on the FDA's door for approval in the US which obviously makes the UK a contender.

    So , please have optimism , i do , stay strong mind and body

    http://www.fiercepharma.com/pharma-a...rapy-edaravone

  2. #2
    Forum Member Davetherave's Avatar
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    Hi Steve

    Congrats on the new arrival! The new research looks very promising.

    All the best, Dave..

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    Hi Dave

    Yes it does, maybe one day soon we can smile and really mean it.

    Many thanks,Steve

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    Quote Originally Posted by steve001 View Post
    Hi All

    As i sit around the house, which i do a lot, i can't help but feel my life has seen the best years even though i am 41yrs old and my partner has just given birth to our second child , a little girl named Millie.

    Then i realise how much effort people around the world are putting in to find treatments and ultimately a cure.

    I now see i can have reasons for optimism, I am going to fight this condition and keep my strength to see my little girls grow up.

    The next 2 yrs are going to be monumental for MND suffers as we are on the brink of several treatment options becoming a reality .

    none more than Edavarone, Masitinib and Tirasemtiv which are now knocking on the FDA's door for approval in the US which obviously makes the UK a contender.

    So , please have optimism , i do , stay strong mind and body

    http://www.fiercepharma.com/pharma-a...rapy-edaravone
    Edavarone is already being marketed in Japan and Korea. What prevents MND sufferers from sourcing it from Japan and using it? what are the obstacles to doing this?

    Charles

  5. #5
    Forum Member Barry52's Avatar
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    Hi Charles,

    My son lives and works in Tokyo. He is fluent in Japanese so I have emailed him to check the feasibility of sourcing this.

    Regards
    Barry
    Iím going to do this even if it kills me!

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    Quote Originally Posted by Barry52 View Post
    Hi Charles,

    My son lives and works in Tokyo. He is fluent in Japanese so I have emailed him to check the feasibility of sourcing this.

    Regards
    Barry
    Good man Barry. I am sure it is prescription-based etc. But we are in a difficult situation. Time is our enemy. I, for one, would take anything that has some proven success in slowing progression down. I look forward to hearing his response. I, for one, would even consider flying to Japan for a load. IWe don't have time on our hands.

    Charles

  7. #7
    Forum Member Barry52's Avatar
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    Quote Originally Posted by njm View Post
    Good man Barry. I am sure it is prescription-based etc. But we are in a difficult situation. Time is our enemy. I, for one, would take anything that has some proven success in slowing progression down. I look forward to hearing his response. I, for one, would even consider flying to Japan for a load. IWe don't have time on our hands.

    Charles
    Hi Charles,

    You were right. In Japan this drug can only be prescribed by doctors and they have very strict rules about medicine. My son said that if he could find it over the counter it would not be authentic. We will have to hope that the US trial goes well and then put pressure on government here.

    Barry
    Iím going to do this even if it kills me!

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    Barry:
    As we thought. Thanks for finding out. I read up on it and the reported gains are marginal. it needs to be used as an adjunct to Riluzole. My reading of the data is its another peashooter in a storm and will not mmake much of a dent in MND symptom progression. We continue to live in hope for a significant breakthrough.

    Charles

  9. #9
    Indeed it is a very exciting time for MND research. The new drugs mentioned, edavrone etc will almost certainly become part of a cocktail with Riluzole. Also the gene therapy work is going to lead to a stronger treatment, in my view, in the not so distant future.

    Just an important point about Riluzole. Unless you are violently sick with it, take it. Yes the words 2 to 3 months of added life are made, but that was only because the trials were over 18 months. There is no data of patients taking it for 10 years, which some people have.

    Some evidence has started to point at stronger effectiveness in some individuals. Simple logic says take. My neuro uses the phrase, adds 10% to life expectency.

  10. #10
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    Just read your post to my partner. First time she has smiled for 2 days (since my diagnosis) so thanks for writing that.

    Like you I intend to fight like f**k to at least delay this so I can watch my baby boy grow up.

    #10%er

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