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Thread: Rch4

  1. #251
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    Hi Kayleigh, the charity web site says in their first paragraph they have run out of money and also point out somewhere that it is an experimental drug.
    My Mum has been on it for a year without side effects. Here are her numbers
    ALS.png

  2. #252
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    HI Sportingmac, you are right that they can give MND/ALS to mice - but they cannot cure them.

  3. #253
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    Quote Originally Posted by alfadoc View Post
    I have read through the 25 pages with interest and people's concerns that this may be a scam. I has looked at their website and the fact that they never ask for money shows it is not a scam. So why you ask the cloak and dagger approach and is this a real charity? The answer is obvious to me as I have seen it all before. The reality is that this group whoever they are, have found what they believe to be a therapy that can help some people with MND. They cannot say that on their website for the simple reason legal action would be taken against them as no human phase 2 trials have ever confirmed RCH4 is effective despite numerous anecdotal reports. The problem is that as we all know everyone is different and rates of progression of the disease varies, so is this just chance that those taking RCH4 are just natural slow progressors.
    I find thus unlikely in new of the fact that many people taking RCH4 are progressing and then the drug appears to slow down the disease.
    This company is providing RCH4 free of charge but understandably they are requesting feedback on how people are doing. The reason is they need to gather as much information as possible. They are trying to get people to invest in their company but in order to do so, you need proof that your product works. By receiving feedback from all those who've received RCH4 for free, they are building up a data base which they can then use to try to convince investors to fund a phase 2 trial.
    It is very difficult for small companies like them to raise this type of investment and everyone wants minimal risk. If they were one of the big pharmaceutical companies, this would have gone through a phase 2 trial by now, for the simple reason that if it actually proved to be ineffective, the big companies are able to write off the costs of the trial as a tax loss. If you are a small company everybody just goes bust.
    I know absolutely nothing about this company but my gut feeling is that they are totally genuine. It is a pity that people have lost faith and funds have dried up because some have called this a scam presumably for their own benefit.
    As for the cloak and dagger, you need to understand that the pharmaceutical world is very cut throat and also are influential. I am guessing that some of those in charge of this company still play a role in either medical or scientific societies and do not wish to be shunned by their colleagues by association with a scam. There are many examples of this happening though the last century, such as the ruination of Dr. Andrew Ivy. Due to his high ethical standards, this man was chosen by the USA government to represent them at the Nuremberg trials but this did not prevent him from being shunned and lose all his positions based on an association with a purported scam which in fact never was.
    You are spot on and thanks for this.

    Have been using RCH4 from the research charity at no cost for over a year no. Zero side effects and my progression has been documented to have slowed by over 70% compared to rate of progression the years prior.

    What is reassuring to me that RCH4 is legit and works is the research charity does not discriminate based on progression like many trials do to achieve a better efficacy number.

  4. #254
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    alfadoc, as Tim said, you are spot on with your evaluation.

    Pity that 'leaders' in ALS research, who have negatively commenting on the drug, cannot realise this fact and understand the damage they do to the charity with their negative opinions while the charity is seeking funding.

    Just because this drug has come to play via an alternative route (i.e. not by a large investment company), it does not mean it needs ruling out but it does not conform to convention in the way of it coming to the market. In fact I think that the way RCH4 is coming to the market is much more reliable. I am very skeptical of the major drug companies pushing drugs through trials with very suspect skewed results. After dealing with RCH4 over the last three years, my eyes have been opened very wide with the amount of corruption and people self protecting their own employment over doing the right thing.

    The charity does not have loads of money and what they had available to them, was not enough to put RCH4 through Phase II trials, so instead they have used their money to supply a small group with RCH4 to get results and then move on to hopefully get investment from someone, or company, who has the money to put through FDA trials, get drug to the masses and then potentially make then a lot of money.

    I am very grateful to the charity for what they have done for my wife. Her ALSFR-S score is still 45 after 3 years on RCH4. Her identical triplet sisters and mother all died within 18 months of first symptoms. 3 years of no progression is too long to be a slow progress timeline and her geneticist said because she was medically identical to her sisters, she would probably follow the same timescale.

    The charity has never charged us a penny and has always supplied very supportive information and help as well. If you have only just come into this awful ALS space, it is worth reading their website even if they cannot supply anymore RCH4 to new users. I would say it is the most informative website on ALS on the net for good information.

    My wife's story is on our website (this website is run by the PAL's on RCH4, not the charity supplying)

    https://rch4als.com/

    Here is my wife's latest ALSFR-S chart with comparisons with her deceased sisters and mother.

    Ness May 19.png

    Hereford Times.jpg

  5. #255
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    I’ve added mums charts below, she’s been on RCH4 since January 2018. She does not take any other drug of any sort.

    Dr. Bedlack`s ALS Untangled organisation has manipulated the voting system putting RCH4 as of less significance than "Placebo therapy" !!!! and same significance as donkey milk, wood preservative and strobe lights.

    My family, mum and I are extremely grateful to the charity for all the ongoing help and support they provide.1111.png
    Last edited by noow17; 19th May 2019 at 07:38.

  6. #256
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    The RCH4 Charity give me much better support than my clinic who could do nothing for me for 2 years. Then I started on RCH4 and given it for free. I donít understand the antagonism against them. ALS Untangled, their papers for presentation at the MND Association conference always refused, journals will not publish their science papers and so on. Hostility has collapsed the charity voluntary funding after completely untrue allegations that they are a scam.
    There is a good page comparing ALS drugs that do work at https://als-new-drug.com/edaravone-radicava-efficacy

    For what it is worth here is my own chart (I should have passed 2 years ago) and statistics from the Patients Like me website.

    zzzzM.png

    PLM Efficacy Table.png
    Last edited by Doblett; 19th May 2019 at 13:07.

  7. #257
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    Capture.jpg My wife's chart. Considering her extrapolated progression prior to RCH4 indicates she should have already died, you may not be surprised to learn that she doesn't think it's a "scam".

  8. #258
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    Its been two and a half years that my mother has been RCH4 and very happy to say she is doing quite well and she has had no side effects at all!!! To all the Debbie downers out there that say its a scam or goats milk or what ever, all I have to say is this RCH4 charity group has giving me and my family some very special extended time to spend with my mother. That's all that matters to us.
    So why not help us find investors to invest into this drug!!!!!!!!!!

  9. #259
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    Quote Originally Posted by leo123 View Post
    Its been two and a half years that my mother has been RCH4 and very happy to say she is doing quite well and she has had no side effects at all!!! To all the Debbie downers out there that say its a scam or goats milk or what ever, all I have to say is this RCH4 charity group has giving me and my family some very special extended time to spend with my mother. That's all that matters to us.
    So why not help us find investors to invest into this drug!!!!!!!!!!

    All they have to do is submit it for trials to the FDA surely?

  10. #260
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    The FDA not only do not do trials, but they dont pay for anything. In fact they charge $1 million if they grant approval. I think maybe they waive that charge for an orphan disease. The RCH4 charity would first have to do the clinical trial and submit results to FDA. A small trial costs $5 to $15 million. Many cost $30 to $100 million. (from Google & the charity site www.als-new-drug.com/cost)

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