Still here thanks to RCH4

[Gorby]

Who are you planning to petition? RCH4 Charity? ALS Society? ALS Untangled? MND Association? Not sure we would get far with RCH4 Charity. I'm sure they know we want info. Other organizations are probably bound by their own nondisclosure agreements not to discuss private meetings and correspondence with RCH4.

 

[GregK]

Ditto what Gorby said.

 

[madmarlon]

Tessiegirl,

Letter posted on other forum is below as requested.

I don't think the forum allows posts from other forums so If you want to delete Mods feel free. I have only posted as I was requested.

Stephen Beyer
10:28 PM (1 hour ago)

Hi Cxxxxxx,

RCH-4 is the coded name for edaravone (generic name) or Radicava/Radicut (brand names in different countries). We introduced its usage in the US about 2.5 years ago and it has been a Godsend for many. It is the most important drug for ALS/MND systemic benefit since Riluzole and far surpasses Riluzole in its performance. I can’t tell you how many times I have pondered/wished/imagined how different our family’s lives would be if our son Ben had access to edaravone prior to his death 10 years ago.

Yes, we provide edaravone to many people around the world. That has nothing to do with my heartfelt endorsement of it, and in truth, it is irrelevant to ALS Worldwide from whom you or others obtain it.

If you wish to discuss this or anything else that may be of benefit or simply interest to you, I will be a passenger in a car for two hours tomorrow morning, with nothing to do because Barbara no longer lets me drive. You can reach me between 9am and 11 am central time on my cell phone, number below.

Kind regards, Steve

Stephen Byer

 

[madmarlon]

I think it would be a great idea to petition ALSuntangled. RCH4 is at the top of the list and yet there is no investigation??? I've wrote to Bedlack to ask why nothing is happening and get no response.

 

[madmarlon]

Also, I did post the ALDWorldwide letter up here and it has disappeared. Guessing that I cannot copy the letter from another forum. Forget as it just appeared. How strange.

 

[affected]

Madmarlon are you saying that RCH4 is actually edaravone?

 

[madmarlon]

No, that is what ALSWorldwide was claiming to try and sell it. RCH4 is definitely not Edaravone

 

[affected]

thanks mate, so easily confused ....

 

[Tessiegirl]

That’s all I need to know Mad Marlon. If Stephen Byers is involved in this I don’t need to go any further. . Is this the same guy who sent people to Mexico and China for stem cells ?Theres some real horror stories on him over on alstdi forum. Id suggest everyone on her go over there long enough to look at the history on this guy. He’s listed under his own name but has Teo accounts.
If u do you’ll run from RCH4. There’s absolutely no telling what u r putting in your veins

 

[Nikki J]

It looks like Byers was telling someone rch4 was radicava and was offering to get them ( sell them?) radicava. I don’t think anyone except Byers at that time believes RCH4 is radicava. It isn’t the fault of RCH4 people that Byers made that statement

 

[madmarlon]

Tessiegirl,

Wait up, you have got the message above all wrong.

RCH4 is nothing to do with Stephen Byers and ALDworldwide.

The letter above is Stephen trying to sell counterfeit RCH4 to patients. This was a letter from Stephen sent. Nothing to do with RC Charity or RCH4.

 

[Tessiegirl]

Tessiegirl,

Wait up, you have got the message above all wrong.

RCH4 is nothing to do with Stephen Byers and ALDworldwide.

The letter above is Stephen trying to sell counterfeit RCH4 to patients. This was a letter from Stephen sent. Nothing to do with RC Charity or RCH4.

I have my own thoughts on that.

 

[madmarlon]

Tessiegirl, at last we agree on one thing at last, and that is Byers is a crook.

 

[Tessiegirl]

No none of those. I have two very good friends who are reporters. I was going to give it to them and have them approach the local tv stations and run articles in their papers. Hopefully 60 minutes will pick it up and run with it. 60 minutes exposed several scammers that touted treatments for ALS.
Marlon .. look him up in the alstdi member port.
One thing.. I’ve never know alsworldwide to give anything away.
Not unless there is motive behind it to profit.
I read the letter again. Your right. He was trying to sell something he called RCH4.

 

[blitzc]

I don't mean to sound uninformed and not able to comprehend, but I am very confused....

So is RCH4 Edaravone, or not? Sure sounds like it from the letter posted by Madmarlon.

Cathy