Page 17 of 41 FirstFirst ... 7151617181927 ... LastLast
Results 161 to 170 of 401

Thread: Rch4

  1. #161
    Forum Member
    Join Date
    Jan 2017
    Location
    Cambridgeshire, UK
    Posts
    36
    May I ask one thing I am curious about? Why most of you members who claim to have been helped by the Rch4 do not give your location?
    I am not asking this with any bad intention. We too have filled the Rch4 application form and submitted. If we know where the people those who benefited from this lives, that will give us more confidence certainly.

  2. #162
    Forum Member
    Join Date
    Nov 2017
    Location
    USA
    Posts
    18
    Not sure Jay besides privacy. For the longest time I didnt have a location. Then after being called out on another forum as a troll, I added it.

  3. #163
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    431
    Dear Don

    Quote Originally Posted by Doblett View Post
    Andy, it was I who copied your very unfair posts, critical of the RCH4 charity to them.
    I need to check the privacy policies of this forum but, common courtesy dictates that you should ask for a person's permission before copying anything they're written to anybody else.

    I note from the privacy policy....

    "5.2 By submitting a Contribution to the Forum you agree to grant the MND Association a non-exclusive worldwide royalty-free perpetual non-revocable licence to use your Contributions. Although you will still own the copyright in your Contribution, MND Association will have the right to distribute, adapt, modify, display, reproduce and transmit such information in any and all media without any duty to account to you. You also grant the MND Association the right to grant licences to users of the Forum to view and copy such information for personal use and to grant any other sub-licences."

    Have you been granted a sub license?

    Given this has happened this will greatly reduce the things I'm willing to share on this forum as I've already shared some significant information about my personal position which I would not want to go any further without my direct and express permission.

    Quote Originally Posted by Doblett View Post
    It is utterly unacceptable to criticize a charity who give so much to helping others.Don
    Please note that being a charity and helping others does not necessarily bring you absolute and total adulation - see for example https://en.wikipedia.org/wiki/Mother_Teresa
    Last edited by nunhead_man; 26th June 2018 at 10:09. Reason: update
    Warmly


    Andy

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

  4. #164
    Forum Administrator Admin_MND's Avatar
    Join Date
    Oct 2015
    Posts
    109
    Good afternoon all,

    Nunhead_man is correct, a number of our Rules and Privacy Polices have been breached within this thread. Our Policy states that all members are to treat all content as confidential, and not to disclose such information to any others without the prior written consent of the member in question (7.2). The forum should also not be used to invade another members privacy or to violate good morals and practices (8.4.2/3)

    If you want to remind yourself of these practices, you can find the Rules and Privacy Policy here.

    Any forum member found to be breaking the Rules and Privacy Policy could be subject to a warning, a suspension or a permanent ban.

    We hope that this incident will not deter any of you from using the forum, and that it will remain a safe place for you to share your experiences and thoughts with each other.

    Regards,

    MND Forum Admin

  5. #165
    Forum Member
    Join Date
    Jan 2017
    Location
    Cambridgeshire, UK
    Posts
    36
    Funny, I just noticed, I haven't added my location too!!! , and now did.
    Last edited by Jay; 27th June 2018 at 14:31.

  6. #166
    Forum Member
    Join Date
    Jan 2017
    Location
    Cambridgeshire, UK
    Posts
    36
    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; 27th June 2018 at 14:34.

  7. #167
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    431
    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: privacy@wzukltd.com
    ............................................

    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; 27th June 2018 at 18:21.
    Warmly


    Andy

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

  8. #168
    Forum Member
    Join Date
    Nov 2017
    Location
    USA
    Posts
    18
    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; 27th June 2018 at 22:38. Reason: Retraction based upon further reading.

  9. #169
    Forum Member
    Join Date
    May 2017
    Posts
    20
    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

  10. #170
    Forum Member
    Join Date
    Jan 2017
    Location
    Cambridgeshire, UK
    Posts
    36
    Thank you mndmarlon. More information, before making a decision is always the best.

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •