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    #61
    CC, i mentioned many times that anyone can get it through the RCH4 website (Google als-new-drug), all you have to do is ask for it and provide a doctors letter. What other information do you need??
    Like you i dont know what the drug is made out of, other than its a peptide that targets a protein, i dont know where the phase 1 results are, or the orphan drug designation, but as i keep saying i know it works for me and many others. my neurologist confirmed it in his letter i posted above.

    The RCH4 charity has already done a Phase I/II safety trials, but they have run out of money to do a phase II/III trials, they are looking for investors to do this. if the right investor comes along the charity will share all the information under an NDA including information on:

    inventors of RCH4
    animal trials
    phase I/II safety trials results
    Orphan drug designation
    Patents

    all the above has been discussed previously so its not a secret. have you noticed that no one taking RCH4 has come out to say it dose'nt work for me, it has nasty side effects, its a scam, or it cost money? No, because it works and we (PALS on RCH4) want to do what it takes to make sure further trials are done and to be available for all ALS suffers.

    If you can help in anyway they are happy to listen

    Nick

    Comment


      #62
      Hi Nick

      You are saying you, and others with ALS are participating in a clinical trial taking RCH4 a drug created by a group of random scientists that call themselves 'The Charity' and there are clinical results of phrase 1 that have been clinically effective, but you don't know where these results are, and they have not been made public ??

      You say this Charity will be happy to listen to me ?? Shouldn't that be other way around and people with ALS/MND and the medical community would be happy to listen to them ?? Maybe they will come out of hiding, and share there clinical results with the medical community and those with this illness.

      The bottom line is 'The Charity' is asking for money correct ?? or as they are cleverly saying it 'investors'.

      All very sketchy in my opinion, but continued good luck to you, and others taking this medication I wish you the best, and hope this medication really works, and for all to have access to it.

      CC

      Comment


        #63
        CC, you said: (You are saying you, and others with ALS are participating in a clinical trial taking RCH4 a drug created by a group of random scientists that call themselves 'The Charity' and there are clinical results of phrase 1 that have been clinically effective, but you don't know where these results are, and they have not been made public ??)

        where did i say this?????? i said no such thing, the clinical trials were done before this drug was supplied to anyone. you know i just give up, there is absolutely no point trying to convince you, no matter what i say you will find a fault because you want to believe its "sketchy"

        Comment


          #64
          I said its sketchy because it is sketchy in my opinion.

          You don't need to convince me Nick. 'The Charity' is the one that should be sharing their 'clinical' findings to the ALS/MND medical community. They claim to have a drug that stops or slows down progression, but will only share their results or give out medication when they have 'investors' ??

          Ok I hope you can prove me wrong. My dear friend has been living with this illness for six years she would want nothing more then to take a medication that is going to stop or slow down her progression. Give me the name of the Charity, and the name and email of someone in the Charity that I can contact that would be happy to listen. If you don't want to reveal it on this public forum you can PM me with it.

          CC

          Comment


            #65
            fill out the contact us form on the website and someone will contact you back. als-new-drug.com/contact-us

            Comment


              #66
              Done.

              I'm anxious to hear from them, and will keep this forum informed when I do.

              Thanks
              CC

              Comment


                #67
                Nick:
                Thank you for the information provided. I am not a 'doubting Thomas'. This may well be a breakthrough medication. Mainstream neurology does not support it. That bothers me little. Any pharmacological (as opposed to genetic) breakthrough is likely to come from 'left field'. Time is on nobody's side here. You clearly got onto it very early in the disease progression. I wish you the very best. If 12 months from now your ALFRS score is stable then you are onto something big. I am 'very slow progressing'. I am one of the lucky ones. I am going to follow the leads you have provided and try get onto it. I am much further down the progression road that you (diagnosed in 2012 but, in hindsight, symptomatic from 2008. If this medication can slow me even 25% more I am in. If it can translate into seeing my children graduate from university it would be a gift. I am, like AnnB and others, frustrated it is not easier in the UK. But will turn over the stones to try acquire it.
                My ask of you is please keep this forum of your updates. Thank you for your contribution thus far.
                Charles

                Comment


                  #68
                  For those interested, this is an email I received from 'The Charity', I just wanted to share it, and to those interested in pursuing it I wish you the best of luck, and hope you get the same results as Nick claims he has gotten from RCH4.

                  CCxox

                  *************************

                  Thank you for contacting us.

                  Naturally, we are very sorry to learn of your friend`s health issue.

                  May I ask where did you hear about us ?

                  You ask a number of questions. Please carefully study www.als-new-drug.com

                  It will take you about one hour.

                  Kindly download the attached ALSFRS-R evaluation form and carefully fill it in.

                  The form is dynamic, i.e., it will change depending on some of your answers.

                  At this time, you may ignore the "FBG" "FVC" and "BP" boxes - they are only needed if your friend is accepted for treatment.

                  ===============

                  Firstly, we must say that we are not your friend`s doctor and we cannot advise him or her. We refer to PALS as our "friends". We can only offer you our thoughts in the light of the information which you give us. Whatever we may say now or in the future must not be considered as medical advice.

                  The options for treating ALS:

                  Riluzole has been available for over 20 years. Unfortunately, it does little to help the condition.

                  There are no other known options which are effective, other than newly licenced Edavaravone in the USA, and this unlicenced drug RCH4 which has been in use for years, and which does appear to demonstrate clinical efficacy. However, please note that we have never made any claims at any time. The source of our data are PALS own monthly monitoring reports.

                  RCH4 is a completely different approach as it effectively targets two ALS antagonistic entities which we found. Efficacy information and clinical evidence available appears in the web site at:

                  www.als-new-drug.com/riluzole-edaravone-rch4

                  and at:

                  www.als-new-drug.com/efficacy

                  We act as a charity and never ask PALS friends for money.

                  In our experience, what is the best profile for our PALS friends?

                  Persons who have a positive mental attitude, are determined, are fighters, who try hard to keep (or gain) weight, are good communicators, have excellent support at home - and in spite of everything have a great sense of humour.

                  These attributes are a great drug in themselves.

                  From observation of (unverified) data from our PALS friends, what are we cautious about?

                  They must look to a high protein, high fat diet to try and hold, and if possible, gain weight.

                  They must try very hard to enjoy lots of "Bad" food - the stuff granny used to dish up (unless their doctor has some specific reason to think otherwise). Fry-ups, red meat, McDonalds burgers, barbeques, junk food etc. Bad for most but good for ALS. Worry about arterial sclerosis and plaques in 40 years time !!!

                  The greatest dangers for PALS are “Doctor Google”, accidental injury and infections.

                  Beware of supplements, folk cures, and the diet protocols (again, unless your doctor has some specific reason for it) suggested by "knowledgeable" people on the Internet. In our experience they just make more trouble - GIT issues, salivation problems etc.

                  Further, some supplements may be / are appetite suppressants. That is the last thing a PALS needs.

                  It is well known that athletes, fitness enthusiasts, military, etc, statistically have a higher incidence of ALS.

                  They are people who are more likely in many cases to take supplements, do gym workouts more than once per week and follow diets.

                  There is no neurological, scientific or validated clinical evidence of efficacy in ALS for any of it.

                  Many of our PALS friends have a long history of taking supplements, were fitness enthusiasts and followed fad diet programmes over years.

                  The available clinical evidence for this new drug:

                  We have never made any claims of efficacy.

                  We are an informal charity group with severe funding difficulties and therefore cannot give any assurance of ongoing availability of the drug RCH4.

                  There can be no guarantee of efficacy for any individual. As with any medication, the response can vary greatly between persons. In the case of RCH4, most PALS experience a slowing of their score decline, some stabilise, and a few show improvement (a reversal of their decline) - but that is over many months.

                  The severity of ALS decline varies greatly between patients, therefore there can be no true "average".

                  Be aware that we must rely on our PALS friends or their carers to provide the monthly reports and we have no way of validating their data. However, we have no reason to believe that the data is inadvertently (or otherwise) inaccurate.

                  Example: https://www.patientslikeme.com/treat...28469#overview

                  There is no assurance that your response may be the same as average. It may be less or it may be more.

                  Whether or not we can help you depends on a number of factors including the approval of a doctor to permit you to take RCH4.

                  In addition, if it may be possible to treat you, we would also require some paperwork, e.g., your Informed Consent, a copy of your formal written diagnosis of ALS, most recent blood tests etc.

                  ........................

                  Your condition:

                  Please find attached herewith your Microsoft Excel ALS `Functional Rating Scale - Revised` (ALSFRS-R) evaluation report form.

                  Kindly check the details which I have inserted for you, and complete the remaining information. The form is dynamic in that it will change in response to some of your answers (which must be in the English language).

                  Obviously, the file is unique to you.

                  The name of your file is: ALS-xxxxx

                  Please note that some devices (Example: Mac or iPAD) are not compatible with Microsoft Excel without a work around. We cannot advise you about this and you will need to enquire from persons who know how to do this. We have an integrated database and cannot use data unless it is in Excel format. Also, old versions of Excel before 2010 can be a problem.

                  Please ensure that the file name remains the same - otherwise we cannot trace you in our system. Do not add dates or names or make copies of the file (your computer would add a number to the file name which makes it a different file name).

                  Return it as soon as possible for consideration. Passage of time is very important.

                  The ALSFRS-R form:

                  As you know, the ALSFRS-R score is the globally recognised gold standard of neurological measurement of the ALS status for a patient.

                  It comprises of 12 questions, each having a score of 4 down to 0 (Zero).

                  Please fill in an honest assessment of your score for each question. Where you are in doubt between two, always choose the lower number. This is in your own best interests.

                  Example:

                  Question 4. Writing:

                  In the list of possible answers, you may be unsure which is most applicable this month:

                  Score of 3/ Slow, but all words are legible (can be read)

                  Score of 2/ Not all words are legible

                  If you are not sure which is the most appropriate, choose the lower number - i.e. " 2 ", in this case.

                  Cells that are for numbers must not have any other characters in them - just a number - otherwise the automatic formulae will ignore the cell content and not include it in data calculations as it will see it as text.

                  Example: "3 months" is text but "3" is data.

                  All cells below row 19 are for numbers (data) only.

                  When you have the form completed, attach it to an email and send it to us with the words “Evaluation form” in the subject line.

                  Do not send any other additional documents at this time please.

                  If you have any questions please email us.

                  Any information you give us will always be confidential and nothing will never be shared with any other person. Your name will never be revealed.

                  =========
                  What next?

                  On reviewing the form, we might then ask you for other documents (recent blood test etc.) and other information. We may then advise you if it could be possible to supply the drug to you subject to your paperwork and a doctor’s permission.

                  There could be numerous reasons which would preclude it from use as it may not suit you, we may not have sufficient supply as it is extremely expensive and we may not have the funds available, or it may not be possible to provide the drug for legal or other reasons.

                  If we are able to accept you, there are numerous things you must consider.

                  Kindly bear in mind the following points:

                  1/ We provide the new medication on compassionate basis and we never ask for money. However, we cannot pay your doctor for his / her professional services. We pay the enormous drug cost ourselves.

                  We have no external income and we get no material or financial benefit from our humanitarian effort.

                  2/ Please carefully study all the information in the web site and in particular the `Welcome` page of the web site www.als-new-drug.com

                  We believe that particular page is the most informative and unbiased source of information for a PALS on the Internet. Set aside 20 minutes to study that page alone for your own benefit and information.

                  This is an investigational new drug which does not have Regulatory Authority marketing approval. Whereas we have clinical evidence of far better efficacy than `Riluzole` or `Edaravone` (aka `Radicava`), we can offer no guarantees of efficacy or assurance of any benefit for you, as patients can and do vary widely in their response to any drug.

                  To date, some 250 patients (in ALS and another condition) have had this or similar drug and no side effects have been reported, however no guarantees of either safety or efficacy can be given with any drug.
                  ..........................

                  After reviewing your attached evaluation form, if we think that we may be able to help you, then:

                  3/ If you are satisfied that you fully understand all the circumstances, then you need to discuss with a doctor if he or she is willing to allow you to use the drug. Most areas of the world have some mechanism to allow access where `Urgent unmet medical need` exists. Recently `Right To Try` laws have been introduced in many areas of the world where only a doctors permission is needed rather than Regulatory Authority permission under `Compassionate access` rules.

                  ALS is universally defined as an urgent unmet need as historically it is considered that there is no effective treatment or drug available.

                  However, doctors are normally unwilling to allow their patients to use anything new, as to do so would take much time (usually months) and effort to get Regulatory Authority permission and it costs a lot of money.

                  Having said that, some doctors are willing to prescribe anyway on compassionate basis where they feel that there is no time to lose and no other potentially viable option is available for their patient.

                  4/ If you cannot prescribe for yourself as a medically qualified professional, and you cannot find a doctor willing to permit you to use this new drug, then advise us. It may be possible to investigate other options in your area.

                  The treatment:

                  5/ The treatment comprises of small injections.

                  In the beginning, the dose is very small to ascertain if it agrees with you.

                  There are typically (for some) two small injections per week ongoing and you inject yourself (into the buttock, belly, calf, or wherever most comfortable and convenient) at home - as many diabetics do, except they must do it sometimes many times a day. To make injections easy, if you wish, there are also automatic injectors available where you merely place it on the skin and just press the trigger.

                  A number of medical measurement devices are required to enable you to fill in your medical parameters (glycaemic, blood pressure, skin temperature etc.) for your monitoring report once every month - all of which are available from on-line vendors such as Amazon.

                  The cost of these instruments is about $180. If you cannot afford this, let us know. As a charity, we will arrange to have them delivered to your home at our expense.

                  6/ The drug is supplied in small sealed glass containers (vials) fitted with a rubber membrane at the top through which the syringe is inserted and the dose is drawn out for injection each time.

                  The vials are stored in your freezer long term at about -18 Degrees C.

                  Each vial lasts some weeks. A vial currently in use is stored in your fridge at about +5 Degrees C.

                  We await your completed ALSFRS-R evaluation please, which is attached herewith.

                  With sincerity

                  Richard

                  RC Charity Group

                  Comment


                    #69
                    CC:
                    Thanks for this.
                    Its a very balanced response.
                    They make no outlandish claims.
                    As they say it comes down to individual response.
                    We are all stabbing in the dark. They are modest in their response and are also stabbing in the dark.
                    It comes down to the individual.
                    I would definitely give it a try. As said if it slowed my progression by 25% it would be a win.
                    My instincts tell me its probably worth a shot if you are very early stages or very slow progressing.
                    They make no 'magic bullet' claims.
                    Pity it is not more readily available.


                    Charles

                    Comment


                      #70
                      Hi Charles

                      I would agree with you. They state they do not take any money from PALS friends, but also state they are having financial difficulties, as Nick stated as well.

                      I question who these people are ? Who created this medication, is the FDA involved at all ? If I'm understanding right its being injected, and is it safe ? and what exactly is the person being injected with ?

                      If you do pursue it Charles, do be careful, and I sincerely wish you the very best results.

                      CC xox

                      Comment


                        #71
                        They make no claims at all. They just disrespect all other things that folks rely on to give them their own positive mental attitude. RCH4 is not a silver bullet, but a negative one. Dude.

                        Comment


                          #72
                          I can't find anything on this charity called 'RC Charity Group', but did find this;

                          ***************
                          ALS-New-Drug: New-Scam?

                          April 14, 2016 ENV 23 Comments

                          UPDATE – June 29, 2016: Apparently the site is back and whining that ALS Untangled is somehow responsible for them losing “charitable funding”. ALS Untangled had nothing to do with RCH4 except having asked me to take the lead in gathering information about it from the provider and from patients. My initial assessment was indeed made quickly but was based on all the information currently available, and was made based on my decades of expert professional experience in identifying Internet scams. There is currently zero scientific evidence for any of the claims made of that website and the provider has been given multiple ongoing opportunities to back up the claims with objective evidence. I never made any claim of “criminality” – rather I feel that something is not right and that PALS should avoid injecting themselves with a completely anonymous substance.

                          UPDATE – May 12, 2016: Apparently the domain owner, Michael Richards, pulled the site and folded up his tent. No idea what he told “his patients”. I have absolutely no guilt over this. If all it took was one person questioning the veracity of that RCH4 whateveritwas to make him pull up stakes, then there was nothing worth putting hope into in the first place.

                          UPDATE: If anyone has attempted to obtain this drug and have retained emails or postal letters, please contact me so I can investigate further.

                          BREAKING NEWS! (April 14, 2016)

                          I was just alerted to a website advertising a new treatment for ALS (http://als-new-drug.com – text provided for reference but no link for reader safety). The site purports to represent a “group of retired scientists and doctors” in Europe who “discovered a previously unknown protein … which promotes ALS” and “designed a drug which safely stops production of the problem protein”. The site provides no references for the protein and a web search of the name given provides no relevant returns. The same goes for the given name of the drug. Neither is any information given about exactly who comprises this group so that their qualifications may be examined.

                          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]

                          This raises a number of red flags and identifies it as a likely scam:
                          1.There’s no identification of the “scientists” behind this
                          2.There are no links to publications about the protein
                          3.There are no links to publications about this new drug.
                          4.The website is cheap, poorly-designed, and unprofessional.
                          5.The website is registered to an individual in Great Britain with an obscured contact email address.
                          6.The website is clearly designed to create anxiety in the reader about “missing out”, thereby making the reader immediately more amenable to the presumably eventual sales pitch for the “immensely expensive” drug.

                          Without any evidence of efficacy, safety, or even the ingredients of this substance, I would very very strongly urge everyone to ignore this website completely.

                          Comment


                            #73
                            RCH4 are now on Facebook.

                            Whilst I can see your rational CC I just don't see what the scam can actually be. The Charity doesn't ask for money and there doesn't appear to be any complaints of sickness from taking this drug on the internet only positive comments. A letter from a Consultant in Nottingham to a GP confirms that the Consultant is aware that the patients is taking the drug and is stable.

                            So what/who exactly is being scammed? Could they br peddling - Hope? I really wish I knew.

                            I received an email from someone in the US after making an adverse comment about Rch4 on patientslikeme. They said that the Charity had approached backers and offered all their research to do drug trials but had been refused on the grounds of the cost of doing drug trials. They suggested that the Pharmaceutical Companies were blocking progress.

                            I don't know what to believe.

                            A x

                            Comment


                              #74
                              cc - It would be possible to have a sample analysed to see what is in the drug. I asked my Consultant why this had not been done and he didn't answer.
                              A x

                              Comment


                                #75
                                A After lots on this drug, I am convinced this a scam. My issue is with the jokers who are peddling false hope and not with the member who posted it on the forum. Dude x

                                Comment

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