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    MNDA, I meant the 'Location' field on the left hand side of each post appears under the User name. I have just added mine. It is allowed and there is a field to be filled in your 'My profile'. I do not wish to know exactly where people live, but would like to know how many in the UK have tried Rch4 with positive outcome.
    Last edited by Jay; 27 June 2018, 13:34.

    Comment


      Good afternoon - I've been doing some more poking around after Don copied my email to the Rch4 lot as Don's action rattled my cage somewhat.

      As I believe somebody else has reported there is no UK charity with ALS in its name except for 1079504 - THE INTERNATIONAL ALLIANCE OF ALS / MND ASSOCIATIONS.

      Of course, the RCH4 lot may be registered as a charity in another jurisdiction bearing in mind this formal organisation is restricted to what is known in the in a rather old-fashioned way as the old Commonwealth - e.g. Canada, Australia, New Zealand.

      Or they may be using the term "charity" more loosely, as in an entity registered in the United States with tax relief as in Save the Children Federation, Inc. Which is a a 501(c)(3) organization and gifts are deductible to the full extent allowable under IRS regulations.

      Re ALS-NEW-DRUG.COM, a check of the registry comes up with this information which is the same as at http://www.ericvalor.org/als-new-drug-new-scam/

      ............................................
      Domain information is:
      Domain Name: ALS-NEW-DRUG.COM
      Registrar WHOIS Server: whois.publicdomainregistry.com
      Registrar URL: Updated> Date: 2015-09-04T02:32:35Z
      Creation Date: 2015-07-05T10:28:14Z
      Registrar Registration Expiration Date: 2016-07-05T10:28:14Z
      Registrar: PDR Ltd. d/b/a PublicDomainRegistry.com
      Registrant Name: Michael Richards
      Registrant Organization: Not Applicable
      Registrant Street: 56, Amanda Close
      Registrant City: Chigwell
      Registrant State/Province: Essex
      Registrant Postal Code: IG7 5JG
      Registrant Country: GB
      Registrant Phone: +7.981150350
      Registrant Email: [email protected]
      ............................................

      Does anyone fancy popping around to 56, Amanda Close, Chigwell, Essex, IG7 5JG and ask what kind of charity this organisation is?

      In my experience charity scams can be perpetrated in a number of different ways and not necessarily on the direct beneficiaries
      Last edited by nunhead_man; 27 June 2018, 17:21.
      Warmly


      Andy

      ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

      "Things turn out the best for people who make the best of the way things turn out"

      Comment


        Andy, with all due respect why are you trying to discredit a charity that has helped so many of us PALS with no charge?

        Please, at a request from my loved ones and myself please do not try to discredit them. They have accomplished something wonderful, slowing progression more so than anything else available and at no cost. The are human and compassionate people and I and others can't avoid to lose them!

        Another PAL here in the states was just approved by the Charity according to their post on PLM.
        Last edited by WeirdTim; 27 June 2018, 21:38. Reason: Retraction based upon further reading.

        Comment


          With respect to privacy, I'm happy for anyone to contact me and I'll talk about my RCH4 experience.

          Send me a PM and I'll facetime / ring whatever.

          I'm in Pacific Pines in QLD, Australia.

          My wife is still doing great and this drug is keeping her alive.

          People keep getting hung up on the 'charity' word. The suppliers of the RCH4 drug are not a registered charity, they just supply the drug free of charge to the users and so that meets the definition of 'charity'. Nothing more to it.

          Thanks

          Marlon

          Comment


            Thank you mndmarlon. More information, before making a decision is always the best.

            Comment


              Originally posted by WeirdTim View Post
              Andy, with all due respect why are you trying to discredit a charity that has helped so many of us PALS with no charge? .
              Firstly I'm not sure it's a charity - they say that on the site but there seems to be no evidence of it.

              Secondly I am very pleased that you think that is helping"so many of us PALS".

              Even if it is only giving a positive feeling about life I'm sure it is extending that life
              Warmly


              Andy

              ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

              "Things turn out the best for people who make the best of the way things turn out"

              Comment


                Andy,

                As I said before it is not a registered charity. It just gives the drug away for nothing. See Oxford dictionaries definition of charity
                'The voluntary giving of help, typically in the form of money, to those in need.'
                Not sure why everyone keeps getting hung up on the fact.

                I personally know quite a few people who have the same results as my wife who is on RCH4. She has been taking for two years and progression has halted. The couple of times that we have been late on taken the drug due to travelling we notice twitching symptoms return (she never has twitching or cramps anymore). Her two medically identical triplet sisters and mother all died from the disease in under 18 months and my wife was told the same would happen to her. Placebo and 'feel good' can only last a couple of months at the most..not over two years.

                So when I read your 'Even if it is only giving a positive feeling about life I'm sure it is extending that life' quote, it does the drug RCH4 a severe injustice. I feedback my actual experience here on this forum, to inform others and maybe help others make decisions of their own based on my wifes real experiences. Your quotation though is not based on any experience. I know you are quite welcome you your opinion but it does frustrate users like us, as we are completely convinced that this drug is saving our lives and are completely grateful for receiving the drug for no money. We are trying to get this drug through the next set of FDA trials so everyone can benefit from it.

                If you have any doubts that it is working come and meet my wife and see what you think. She was in a wheelchair to move around any distance just over two years ago! We have just been visiting Sydney this weekend and she walked everywhere including a lap of the botanical gardens!

                Comment


                  Well they have my details, I have to try to arrest my slippery slope.
                  Will await reply and hope I will be acceptable.
                  Had my Doctor visit today and showed him my email reply, He cannot endorse obviously but can see how I would want to try.
                  Onward's TIANDB

                  Comment


                    Not much to lose, Kevin ;

                    All the best.

                    Love Terry
                    TB once said that "The forum is still the best source for friendship and information."

                    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                    Comment


                      Worth to look at Gerti's words towards the bottom of the page on this link. It seems like RCH4 has helped her some..

                      https://www.patientslikeme.com/forum...cs_sort=recent

                      https://www.patientslikeme.com/members/556803
                      Last edited by TIANDB; 2 July 2018, 23:12. Reason: ADD

                      Comment


                        Andy, let me get this straight. You took a confidential email from the charity, posted it and then have issues with someone sharing your post on a public forum with the charity??? Seems a little odd.

                        You did no one including yourself ant favors. Now a very long time user of RCH4 is booted off this forum and their feedback can't be posted for others......including yourself. From what I read your diagnoses isn't a sure thing yet.....congratulations and enjoy life!!! Please don't try to take mine and others opportunities away for a life..yes...a life by disregarding RCH4, the Charity or others who have actually been diagnosed. Thank you.

                        Comment


                          Originally posted by WeirdTim View Post
                          Andy, let me get this straight. You took a confidential email from the charity, posted it and then have issues with someone sharing your post on a public forum with the charity??? Seems a little odd.

                          You did no one including yourself ant favors. Now a very long time user of RCH4 is booted off this forum and their feedback can't be posted for others......including yourself. From what I read your diagnoses isn't a sure thing yet.....congratulations and enjoy life!!! Please don't try to take mine and others opportunities away for a life..yes...a life by disregarding RCH4, the Charity or others who have actually been diagnosed. Thank you.
                          A 2nd to this. It is hard enough on folks with such conditions without bitterness spoiling the chance for a little extra time with loved family members. The biggest percentage of MND sufferers do not have the chance of any extra time and for most it is sadly short.
                          Any possible better treatment should be given a chance and the honesty of those taking the risk should be applauded.
                          I hope to add a little and report all honestly here so that others may consider if beneficial ?
                          Great respect and advise so far in my dealings
                          My location is listed and my story line all so true sadly . I hope and try for miracles for us ALL.
                          TIANDB

                          Comment


                            Originally posted by WeirdTim View Post
                            Andy, let me get this straight. You took a confidential email from the charity, posted it and then have issues with someone sharing your post on a public forum with the charity??? Seems a little odd
                            Hi Tim - you are not being helpful

                            Firstly there is no doubt about my diagnosis. I remain pleased as does my neurologist that my initial damage caused by motor neurone disease does not seem to have changed very much over three years apart from some weakening and I wait with trepidation further developments.

                            In case you have not seen my posts my neurologist works for King's College Hospital London as a senior research scientist and has some funding from the Motor Neurone Disease Association for his work on working out the causes of the disease.

                            Secondly, I was posting as an individual to what I thought was a private forum about the difficulties I was having with obtaining a drug from a public organisation that I understood was helping some pals and that I wanted to try.

                            I found the organisation providing this material unhelpful and I was posting to this private forum to explain what had happened to me. This included abrupt instructions to supply files with a particular file name and inaccurate assumptions made by the organisation about how I'm dealing with the disease and how I run my life. Not the least asserting that my diagnosis was wrong.

                            So I'm entirely entitled as I understand it to speak in this forum about my experience in the expectation that I'm posting in private.

                            And I understand by doing this I burned my bridges with the suppliers of RCH. And this worries me as such behaviour suggests a certain approach to treatment which I do not understand.

                            I can understand, for example, why obese people may be denied treatment until they lose the weight that is in part causing their difficulties but I do not understand why somebody in the early stages of the disease which has no effective treatment and no real understanding of cause should be denied something that helps some pals.
                            Warmly


                            Andy

                            ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                            "Things turn out the best for people who make the best of the way things turn out"

                            Comment


                              Hello
                              Why isn't Rch4 available on the NHS?

                              Comment


                                Hi Chrisp,

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

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

                                Comment

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