Old 07-14-2018, 02:08 PM #181 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,316
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,316
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Still here thanks to RCH4

Yes, Tim, I linked to your dx thread also, because what you say I said is not there.

Let's label opinions as such, and facts as such. We owe that to the difficulty that many here have in focusing and reading at all.
lgelb is offline  
Old 07-15-2018, 03:12 PM #182 (permalink)
southernmichigan's Avatar
New Member
 
Join Date: 2017
City: detroit
State: michigan
Country: us
Interest: I am a family member of someone with ALS/MND.
Posts: 13
southernmichigan is on a distinguished road
southernmichigan southernmichigan is offline
New Member
southernmichigan's Avatar
Join Date: 2017
City: detroit
State: michigan
Country: us
Interest: I am a family member of someone with ALS/MND.
Posts: 13
southernmichigan is on a distinguished road
Default Re: Still here thanks to RCH4

Hi everyone, just a update on my mother who been on RCH4 for 22 month now and she is stable doing well!!!!!!!!!! Thank God. The RCH4 group have been outstanding in there support and concern of my mother. I don't have a lot of time to visit these forums but I do this to try to get this group and there discovery acknowledged by someone or some investors. We may never know the outcome of this drug if its not recognized. I have dealt with this group over the past 4 years, and I know they where around long before I got in touch with them. We are your average family like 99% of the USA, and this group has never ask for a dime from us.
southernmichigan is offline  
Thanks from
GregK (07-15-2018)
Old 07-15-2018, 05:37 PM #183 (permalink)
Nuts's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: Littleton
State: North Carolina
Country: US
Diagnosed: 01/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 2,419
Nuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud of
Nuts Nuts is offline
Extremely Helpful Member

Nuts's Avatar
Join Date: 2014
City: Littleton
State: North Carolina
Country: US
Diagnosed: 01/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 2,419
Nuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud of
Default Re: Still here thanks to RCH4

Quote:
Originally Posted by WeirdTim View Post
No mud Laurie:

April 2017 Diagnosed
I'm confused. I read the thread and don't see where Laurie said Tim didn't have ALS.
So much contention, so little time.
Nuts is offline  
Old 07-15-2018, 06:21 PM #184 (permalink)
GregK's Avatar
Very Helpful Member
Forum Moderator
 
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,724
GregK has disabled reputation
♥ GregK GregK is offline
Very Helpful Member
Forum Moderator

GregK's Avatar
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,724
GregK has disabled reputation
Default Re: Still here thanks to RCH4

Hey, SouthernMichigan, might you have some (written?) feedback from her Doctor, too?
GregK is offline  
Thanks from
Cherise77 (07-22-2018)
Old 07-15-2018, 11:24 PM #185 (permalink)
Cherise77's Avatar
New Member
 
Join Date: 2018
City: Vancouver
State: BC
Country: CA
Diagnosed: 07/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 35
Cherise77 is on a distinguished road
Cherise77 Cherise77 is offline
New Member
Cherise77's Avatar
Join Date: 2018
City: Vancouver
State: BC
Country: CA
Diagnosed: 07/2018
Interest: I am a family member of someone with ALS/MND.
Posts: 35
Cherise77 is on a distinguished road
Default Re: Still here thanks to RCH4

Yes that would be very helpful to see a doctors feedback about a patient on RCH4.
Iíve looked into this drug for my Dad. Problem is there is no way to contact them now on their website.

Does anyone know the email address for the doctors giving this drug away?
Cherise77 is offline  
Old 07-16-2018, 02:38 AM #186 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,966
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,966
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Still here thanks to RCH4

Cherise, sadly they only help a very small handful of PALS. And I mean a minute number.
They won't allow PALS to pay for the treatment, and so they give it to a very few, and currently they don't have enough money to take any new PALS on, and have removed their contact information.

While it seems, to me, it works for these few, hundreds of thousands of PALS, including my husband, die without any hope of the same because this will not be a publicly available option.

I'm just saying, and this has always been my problem here, it may well work, yay for those select chosen few, but too effing bad for the hundreds of thousands that can't get it.

I am truly glad those chosen few that are still saying it genuinely works. I'm afraid I would be unable to face the hundreds of thousands dying in the most horrific way, and tell how well I was doing, knowing the vast majority have no hope.

OK back to the theme of this thread, which is how well the chosen few are doing and are still here thanks to the mystery drug. Sorry to interrupt the program.
affected is offline  
The Following 2 Users Say Thank You to affected For This Useful Post:
Cherise77 (07-22-2018), Gorby (07-23-2018)
Old 07-16-2018, 04:24 AM #187 (permalink)
New Member
 
Join Date: 2015
City: Pacific Pines
State: QLD
Country: AUS
Interest: I am a caregiver for someone with ALS/MND.
Posts: 39
madmarlon is on a very distinguished road
madmarlon madmarlon is offline
New Member
Join Date: 2015
City: Pacific Pines
State: QLD
Country: AUS
Interest: I am a caregiver for someone with ALS/MND.
Posts: 39
madmarlon is on a very distinguished road
Default Re: Still here thanks to RCH4

Just wanted to clear a few things up that might have been missed.

RCH4 has been Validated in Phase l/ll clinical trials and has Orphan drug designation, and so has had trials and tests submitted to be able to obtain this status (I have seen the validation certificate of the molecule with my own eyes).
It also means it is legitimate to be used with a Dr or Neurologists permission (as far as I'm aware).
I doubt very much that this drug is placebo effect, and if so would only last a couple of months and my wife has had no progression for 2.5 years since starting the drug.
RCH4 will go to full trials as soon as someone can sponsor the trials which are too expensive for the Charity to afford.
The way RCH4 has come about is different from other drugs. Most are discovered and tested by multi-billion dollar companies and then they have the money to actually push the drug through trials whether effective or not, on some somewhat dubious results.
RCH4 has been developed by a small team who have put all their money in development and small scale trials. They can't afford anything else. That does not make it wrong, just different way. They probably have more reliable real life results as well.
Notice quite a few people coming out saying when are the inventors coming out and giving away the secrets? I don't see anyone chasing the multi nationals and asking the same questions. Yes it is frustrating to see that a drug might be available that may help, but it has to go through due process. If the details of the drug were released it would be just counterfeited / copied with no control on quality and reliability.
We just need to get sponsorship to go through next set of trials.
madmarlon is offline  
The Following 3 Users Say Thank You to madmarlon For This Useful Post:
jennyinfrance (07-23-2018), TIANDB (07-26-2018), WeirdTim (07-16-2018)
Old 07-16-2018, 04:59 AM #188 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,538
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,538
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Still here thanks to RCH4

What country or countries had the phase 1-2 trials? These trial were on ALS patients? Placebo controlled and blinded? When did they happen? What name did they give the substance when in trial and getting orphan drug designation.? Was that the designation in the US or another country? Orphan drug designation is a matter of public record here in the US

Sharing this information would not reveal any proprietary information but would make some of us lots more comfortable with this process

I am not sure what you mean about multi nationals? If you mean drugs that are in trial from big companies I think we do know the mechanisms of the drugs what research led to their development and a fair amount about their biochemistry.

I believe what you say about your wife. I knew your sister in law.
Nikki J is offline  
Old 07-16-2018, 05:02 AM #189 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,966
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,966
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Still here thanks to RCH4

Quote:
If the details of the drug were released it would be just counterfeited / copied
and would be available to the hundreds of thousands rather than the chosen few?

I am not trying to start yet another argument, I believe ya'll. I just can't believe anyone so benevolent plays god by deciding which few are the chosen few that will live.

I would also love to know the details of the trials.
affected is offline  
Old 07-16-2018, 06:07 AM #190 (permalink)
WeirdTim's Avatar
New Member
 
Join Date: 2017
City: NA
State: NA
Country: US
Diagnosed: 04/2017
Interest: I have been diagnosed with ALS.
Posts: 93
WeirdTim is on a very distinguished road
WeirdTim WeirdTim is offline
New Member
WeirdTim's Avatar
Join Date: 2017
City: NA
State: NA
Country: US
Diagnosed: 04/2017
Interest: I have been diagnosed with ALS.
Posts: 93
WeirdTim is on a very distinguished road
Default Re: Still here thanks to RCH4

Who has read the charities website recently.....completely? So much information that answers a lot of your questions. The chosen few comments are insulting as tgey, unlike many, don't discriminate based on type of ALS or progression.
WeirdTim is offline  
Thanks from
jennyinfrance (07-23-2018)
Old 07-16-2018, 06:21 AM #191 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,538
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,538
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Still here thanks to RCH4

I just looked. They do talk about the proposed mechanism now. Thank you. I can not see anything about a blinded placebo clinical trial. The graphs are from patients who knew what they were getting. It is encouraging and hopeful but it is still not the same as a trial.

There is one graph that seems to be from pre clinical work. It would have been nice to have a paper citation so we could have context

Was there anything there about this orphan drug designation? I could not see it?
Nikki J is offline  
Old 07-16-2018, 06:31 AM #192 (permalink)
WeirdTim's Avatar
New Member
 
Join Date: 2017
City: NA
State: NA
Country: US
Diagnosed: 04/2017
Interest: I have been diagnosed with ALS.
Posts: 93
WeirdTim is on a very distinguished road
WeirdTim WeirdTim is offline
New Member
WeirdTim's Avatar
Join Date: 2017
City: NA
State: NA
Country: US
Diagnosed: 04/2017
Interest: I have been diagnosed with ALS.
Posts: 93
WeirdTim is on a very distinguished road
Default Re: Still here thanks to RCH4

They aren't going to publicly post exactly what it is. Just know that 99.9% of us who take it won t comment publicly because of the flack we catch when we do. Being terminally ill, trials don't mean much to me because of the RCH4 users i spoke to around the world provided me enough confidence to use it. I'm dying....trials now would do nothing right now to preserve my life if i didn't find RCH4.

No offense but their site takes a half hour or more to completely read....lots of information.
WeirdTim is offline  
Thanks from
jennyinfrance (07-23-2018)
Old 07-16-2018, 07:30 AM #193 (permalink)
alscansuckit's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Detroit
State: Michigan
Country: USA
Diagnosed: 02/2012
Interest: I am a family member of someone with ALS/MND.
Posts: 3
alscansuckit is on a distinguished road
alscansuckit alscansuckit is offline
New Member (Say Hi)
alscansuckit's Avatar
Join Date: 2018
City: Detroit
State: Michigan
Country: USA
Diagnosed: 02/2012
Interest: I am a family member of someone with ALS/MND.
Posts: 3
alscansuckit is on a distinguished road
Default Re: Still here thanks to RCH4

My wife has used RCH4 for the past 41 months. There is no doubt, when looking at her ALSFRS chart, that is has dramatically slowed the progression. If we extrapolate her decline prior to RCH4, she should have died about a year ago. As far as those who claim it is a placebo effect, well, that usually lasts days or weeks, not years. I have never been able to understand the critics. Shouldn't something that actually works be promoted in the ALS community? Instead, it has been accused of being a scam, to which I have asked, releatedly, if we have never been asked to pay a single penny for a treatment, and they have never promised any effectivity, how can it be a scam? Nobody has yet wanted to answer that question. To those who ask, how can you inject that when you don't know what it is, I say, of course we had concerns initially, but it's a TERMINAL disease with no treatment options. What other choice does one have? I do agree that it is a shame that so few have access. We were just lucky when we stumbled across them. If the ALS community would embrace RCH4 and try to bring it to market, which requires hundreds of thousands, and probably millions, of dollars, instead of shouting down something THEY KNOW NOTHING ABOUT, then perhaps more would have access.
alscansuckit is offline  
The Following 2 Users Say Thank You to alscansuckit For This Useful Post:
TIANDB (07-26-2018), WeirdTim (07-16-2018)
Old 07-16-2018, 07:31 AM #194 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,538
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,538
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Still here thanks to RCH4

I did not ask what the chemical composition was I asked if there was reference to the clinical trial and commented that in their section on preclinical a citation of the paper ( if any) would have been good. And information on their orphan drug designation

I don’t find it anywhere. I have looked twice. If that information is present please tell us where. Much of the site was not new to me nor was it necessary to read their comments on riluzole radicava or stem cells

I read it and clicked the links that might have ( but did not) give me the information I hoped for

Last edited by Nikki J : 07-16-2018 at 07:40 AM
Nikki J is offline  
Old 07-16-2018, 07:56 AM #195 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,538
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,538
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Still here thanks to RCH4

Most of us are intrigued by this. All of us are happy for those who stabilized or slowed progression.

If there were a clinical trial and an orphan drug designation as stated it would be great to be able to see those things and to show to our doctors and ask about it. Showing them a paper on preclinical work would help too. The more light that shines the more chance of getting people on board to push for this.

I am happy for the people who are reporting great resluts and I don’t want to take anything away but if they are using all their resources to supply this how are they ever going to move forward and fund another trial? Are they pursuing separately an investment partner does anyone know?
Nikki J is offline  
Thanks from
Cherise77 (07-22-2018)
Closed Thread

Tags
ability, age, als, clinical, clinical trial, cost, drugs, edaravone, fda, free, information, neurologist, patientslikeme, progression, riluzole, support, treatment, treatments, trial, work, worldwide


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
RCH4 revisited again jennyinfrance General Discussion About ALS/MND 5 12-04-2017 03:57 PM
RCH4 Revisited Mtzu General Discussion About ALS/MND 7 06-12-2017 03:21 AM
RCH4 Drug stopped by Dr. Bedlack mich5 ALS Research News 61 10-18-2016 10:59 AM


All times are GMT -5. The time now is 10:59 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016