Page 27 of 41 FirstFirst ... 17252627282937 ... LastLast
Results 261 to 270 of 401

Thread: Rch4

  1. #261
    Forum Member
    Join Date
    Nov 2014
    Location
    Epworth
    Posts
    108
    Quote 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?

  2. #262
    Forum Member
    Join Date
    Nov 2017
    Location
    USA
    Posts
    18
    This helps explain how legitimate the self reporting protocol those of us using RCH4 truly is.*

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

  3. #263
    Forum Member
    Join Date
    May 2017
    Posts
    20
    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

  4. #264
    Forum Member
    Join Date
    Mar 2018
    Posts
    6
    zzzzSMZ.png

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

  5. #265
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    930
    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.

  6. #266
    Forum Member
    Join Date
    Sep 2018
    Posts
    9
    Mums latest ALSFR-S graph. Grateful she's still doing really well
    .jjjj.png

  7. #267
    Forum Member
    Join Date
    Jul 2019
    Posts
    1
    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.

  8. #268
    Forum Member Puddy's Avatar
    Join Date
    Jul 2019
    Location
    Costa Blanca
    Posts
    20
    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.

  9. #269
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Location
    Newark on Trent
    Posts
    2,363
    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
    Iím going to do this even if it kills me!

  10. #270
    Forum Member Puddy's Avatar
    Join Date
    Jul 2019
    Location
    Costa Blanca
    Posts
    20
    That is so sad. So much goes towards cancer research and their advertising yet MND is just as devastating.

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
  •