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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 don’t 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; 19 May 2019, 13:07.

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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".

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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!!!!!!!!!!

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          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?

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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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              Originally posted by originalthought View Post
              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)
              Thanks for that. I guess that approval will never be given for RCH4 then - unless a large R&D budget is available - and that none of the big Pharma's seem interested - why is that then?

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                This helps explain how legitimate the self reporting protocol those of us using RCH4 truly is.*

                https://rch4als.com/self-reporting-accuracy

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                  Someone will pick it up and run with it someday, as the results are too good to miss on as an opportunity. It will cost a fair bit of money to get to trial but there is a big bucket load of money to make once FDA grants licence.
                  Anyway below is my wife's latest chart. Still going well which is great news.
                  Nessy June 19.jpg
                  If you are new to the forum, my wifes tragic history can be read on the RCH4 users stories on our website https://rch4als.com/our-stories/f/va...2%80%99s-story

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                    zzzzSMZ.png

                    My mothers latest monthly score sheet , hopefully I downloaded right!!!!!!!!!!!

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                      Hi Leo. Thanks for uploading your mums scores. The chart looks like ot has slowed down jer decline considerably if the estimate without the drug is accurate. I hope that the study proves it will be beneficial to us and it gets the ok to be rolled out. Lynne
                      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                      I'm staying positive and taking each day as it comes.

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                        Mums latest ALSFR-S graph. Grateful she's still doing really well
                        .jjjj.png

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                          My father has been taking RCH4 for a little over a year now and I cannot begin to express how pleased we are. He has not experienced any side effects as he did with other medications and his progression has slowed down significantly. Although he continues to have some decline, we believe we have been given extended time with him and are so thankful. I do wish we had started earlier, but we felt compelled to at least try some of the mainstream prescriptions only to find that he could not tolerate the fatigue for the slight benefit he received. I do worry about the difficulty in receiving funding and hope there is someone who realizes the amazing potential that RCH4 offers.

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                            I've been on the charity website and they have removed their contact info because of scams/abuse etc. Does anyone know how I can request this drug for my husband please? Thank you.




                            Husband, Nigel, diagnosed with ALS in July 2019. We live in Spain and the medical care is superb. Nigel currently taking Riluzole. Tried acupuncture/Chinese medicine and bee venom (privately), but not helpful. Had stem cell therapy 6 months ago, but no improvement so far.

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                              I’m sorry to disappoint you Puddy but the charity announced recently that they have run out of funding and therefore they are not accepting any new candidates. Unless a new sponsor with deep pockets can be found it is unlikely that the drug will taken through the full trial stages.

                              Best wishes,
                              Barry
                              I’m going to do this even if it kills me!

                              Comment


                                That is so sad. So much goes towards cancer research and their advertising yet MND is just as devastating.




                                Husband, Nigel, diagnosed with ALS in July 2019. We live in Spain and the medical care is superb. Nigel currently taking Riluzole. Tried acupuncture/Chinese medicine and bee venom (privately), but not helpful. Had stem cell therapy 6 months ago, but no improvement so far.

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