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Thread: Rch4

  1. #181
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    Quote Originally Posted by Barry52 View Post
    Hi Chrisp,

    Rch4 has not undergone the trials necessary to get approval in the USA and Europe.

    Barry
    Please read their website completely as all your questions will be answered. It has gone through Stage 1 here in the states and passed. Contact the Charity with your questions as they will respond in detail.

    Www.als-new-drug.com

  2. #182
    Forum Member Barry52's Avatar
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    Quote Originally Posted by WeirdTim View Post
    Please read their website completely as all your questions will be answered. It has gone through Stage 1 here in the states and passed. Contact the Charity with your questions as they will respond in detail.

    Www.als-new-drug.com
    Regardless of what you post Tim the drug does not have regulatory approval in any country.

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

  3. #183
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    Barry,

    RCH4 has Orphan Drug Designation which I believe means that it is approved for use with the acceptance of a medical practitioner

    The Orphan Drug Designation program provides orphan status to drugs and biologics which are defined as those intended for the safe and effective treatment, diagnosis or prevention of rare diseases/disorders that affect fewer than 200,000 people in the U.S., or that affect more than 200,000 persons but are not expected to recover the costs of developing and marketing a treatment drug.

    Marlon

  4. #184
    Forum Member Barry52's Avatar
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    Hi Marlon,

    Yes I am aware of that but I don’t want pals in the Uk to get false hope of a cure when there is no realistic prospect of them obtaining the drug.

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

  5. #185
    Forum Member TIANDB's Avatar
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    I will take the risk although the 19 Folks on patients L M have found no bad reactions only good.
    Last edited by TIANDB; 12th July 2018 at 06:58. Reason: ADD

  6. #186
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    Good Luck to you TIANDB, I hope you can obtain the access you need, and get the results you seek from this medication.

    CCxox
    .

  7. #187
    Forum Member Terry's Avatar
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    Hi Jeremy;

    If this is what you are asking about, post here and do the same on other relevant threads.

    Hope it helps, Terry

  8. #188
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    Andy,

    My wife has been on RCH4 more than 3 years and the charity has always been courteous, responsive & supportive. In my opinion, it is unfair to target people who themselves pay for many peoples treatment. Just look at https://www.patientslikeme.com/treat...28469#overview

    Like weird tim said, we don't want to lose them.

    Also, I read your comment about criticizing them for suggesting you gain weight. That was likely suggested because multiple studies have shown that a higher body fat content equates to a longer life with ALS. There was a mouse model study done about 4 years ago, or so, sorry I tried finding it via google and could not, that showed overweight mice with ALS lived 45% longer than those of a normal weight. So, that's why. I understand you have other health concerns, but their advice was not bad advice, especially considering that ALS will override all other health issues, eventually.

    I wish you the best of luck.

  9. #189
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    Had my first ALS clinic today since starting RCH4 three months ago. The docs were happy with no measurable progression. They now are having me do some different exercises to maintain or maybe improve what I've lost prior to RCH4.

  10. #190
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    Hello
    Are they any plans for Rch4 to be trialled in the UK?
    Chris

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