Still here thanks to RCH4

[Bestfriends14]

I agree, Tessiegirl. We've got forum members physically failing everyday and these RCH4 recipients come on here saying that they're doing fabulous, but then say "nope, won't give any further info", either on contacting the givers of the meds and/or the deeper info on the drug itself.

Also, how or when it RCH4 passed phase 1 clinical trial would be helpful, but is not divulged either. I have contacted two recipients of RCH4 asking for help on how to contact the company and was not given a way to contact them. Surely if they are already recipients of such a wonderful drug, they would somehow have a way to ask on my behalf if I could get a hold of this medication.

 

[lgelb]

There is no way that the current subjects are serving as Phase I subjects. Phase I is only for healthy volunteers. As for other types of trials, we have seen the owners' statements that they are not currently conducting trials toward regulatory approval.

The FDA and ex-US counterparts would have to approve the design of any such trial, and there would have to be all the safeguards/other infrastructure behind it that we have discussed previously, all of which they say they cannot afford.

Kim, if the pts signed a nondisclosure agreement, they are violating it by discussing personal results in any form, uploading longitudinal data, let alone all the laments about conferences and such. Yet the violators are evidently still getting drug.

Besides, keeping it real, if this organization (I'm not going to call it a charity any more till I see a registration as such) is poor and toothless as they assert, they are not going to be able to enforce any such agreements. One or the other.

So this selective, idiosyncratic disclosure still makes no sense from the ALS perspective. Once again, if you don't have the money to develop it and it works great, you patent it and sell it outright or license it. This often happens -- wait for it -- before Phase I, if the mechanism makes sense and the pre-clin is clean.

Anyone posting in this thread with the intent to tease, deceive or obfuscate pending some move coming to fruition has no moral ground to stand on.

 

[Tessiegirl]

I have two friends that are reporter / journalists that I'm going to talk to Monday . They looked into the IBC challenge fund allocation for me. I'll see if they they can look into it for us.

 

[Gorby]

The Glasgow conference would be an amazing place to show a poster. Of course, a speaking presentation is better, but a poster is still useful. Also, I would love to see the abstract submitted for the conference.

https://www.mndassociation.org/symposium/

 

[Nikki J]

Posters also get seen by virtually everyone. Even people who don’t attend the actual poster sessions take a look earlier in the day. The platform sessions have 2 or 3 running simultaneously except for the opening and closing sessions.

 

[KimT]

Ron,

I don't begrudge people coming to a forum and stating that their PALS or they have had success with RCH4. I've never though of it as rubbing my nose in it. I couldn't get into several clinical trials (phases 2 & 3) because of my age or length of diagnosis but I was very eager to hear about anything that might slow this disease or help others. I was bewildered at the age cutoff for one trial because I was in better shape than most 40-year olds, but I would never do anything except cheer for those who got in and hope that it would help them. Also, from what I have gathered, the supplier of RCH4 opened it back up for awhile last year and, my guess, is that is when WT started taking it. Ron, remember when some of the members of ALSTDI were angry at Jason for not making his regimen available in the forum? We furnished him with all our data from our blood work but it was his choice not to make it public. Jason worked for years coming up with it, I'm sure. It's his to share or not to share.

If a blocking agent were found for C9 or SOD1, I'd be so happy for our FALS even if it did nothing to advance a cure for me.

Laurie, I've not read a non-disclosure agreement but, if there is one, it might allow patients to report their personal data but not allow them to disclose anything about the substance. I don't know because I've not read the paperwork one gets when accepted.

Again, the parties that will make things happen are the provider and the ALS doctors/organizations. Perhaps Glasgow is a start. Maybe not. If it is truly working, for the sake of those taking it, I hope the supply doesn't run out. In fact, that could be the reason they are so willing to share their results. They want it to move forward just as much as the rest of us do.

 

[madmarlon]

Tessiegirl,

I want nothing more than for other PALs to receive this drug. That is why I come on here publically and report my wifes results which is the same for the other users. The drug needs funding to go to Phase 2 and our results may be a part in helping securing funding. We don't feel bad, we feel very privileged and we are doing what we can to try and help it go to phase 2 trials. We don't come on here to bragg and I feel sad that you feel that way.

I know it is frustrating not knowing the specific details of testing in Phase 1 but even if you did, it would not get you access to the drug. There is enough info already on the net, to tell you what the drug is and how it works, if you look around.

The public bashing of the RC Charity if anything does not help us secure financial backing and therefore will delay other PALs getting the drug which is a disaster.

 

[lgelb]

Kim, comments about the mechanism (e.g. a monoclonal antibody) have been made here and elsewhere, so that's why I don't think there's been a very robust (if any) NDA signed by P/CALS. And in all my pharma years, I never saw an NDA that was OK with patient data and not the mechanism, even so, since the mechanism by that point is never a secret.

Marlon, "public bashing" (let's call it inquiry, shall we?) has never prevented funding from serious people for a seriously real solution to a fatal disease. But that begs the question of why "public bashing" occurs, of course. If development were being done in a way that could lead to commercialization, all you would be reading would be plaudits. So yours is a self-canceling argument, I'm afraid.

Please don't attempt to guilt anyone here into thinking they are responsible for something great missing the market. P/CALS have enough to worry about.

 

[madmarlon]

Laurie,

I have not signed any disclosure document but I was asked at the start, not to release specific details on the drug without their permission. Anything like our experiences and results etc are allowed to be shared. I get the drug for nothing and I believe it is keeping my wife alive and so I respect their requests. I don't necessarily agree with it, but that is the way it is at the moment. This may be changing soon.

I hope you don't think that I'm on here with 'intent to tease, deceive or obfuscate' because I'm not, and I offer the chance for anyone to come and meet up, or you can contact my Neuro or I'll answer anything that I allowed to. I do feel a little hurt by the suggestion as I feel that I go out of my way to try and help people if I can and if you knew me you would know that.

I'll even be happy to be part of an 60 minute interview, send them my way.

 

[lgelb]

Marlon,

I'm pointing out that some of the statements in this thread have been intended to attack individuals on a personal basis, and to mislead, whereas as you can see and as Atsugi highlighted earlier in this thread, these are moderated forums.

So we do take actions relative to forum posts and accounts if/as needed to support the values that benefit our members, truthfulness among them. ALS takes enough without having to worry about "he said, she said."

Thanks for clarifying that your reticence is a choice and not a legal necessity; that certainly makes more sense.

 

[Tessiegirl]

Marlon..you are dancing around the point. I don't care if u have access to a drug for your wife. I'm happy she has slowed her progression. I take exception to anyone that talks about how well they are doing on the drug while others are suffering and can't get it.Especially on a ALS forum where everyone suffers.
You talk about raising money for a phase two.. if they don't take donations ,if they won't clarify what their game plan is to advance the drug to trial( i don't believe its passed phase one) what can we do but ring our hands and be frustrated?
All you folks on RCH4 talk in circles,and evade questions is awful funny. Best to say u don't know and haven't got a clue to our questions.
You very well may get your chance to be on 60 minutes. Maybe they can get answers from you guys . We sure can't.

 

[Tessiegirl]

One more questions if u please. Why would they give you this information to start with? Did you get the information on the internet and put two and two together or did they give it to you themselves? And I quote you ....
I have not signed any disclosure document but I was asked at the start, not to release specific details on the drug without their permission

 

[GregK]

Marlon,
Sry, I thought I'd been clear....

I'm simply asking for proof that ALS Worldwide attempted to sell RCH4, as you stated.

 

[madmarlon]

Gee, I'm in the firing line here a bit.

Laurie, thanks for clarifying and I agree, personal insults have no place on any forum.

Tessiegirl, I didn't think I'm dancing around the point as I've stated I cannot give you the Phase I trial results as I'm doing as the RCH4 supplier has asked. The game plan going forward is simple. You are right that the RC Charity don't accept money, but the plan is to get business investor onboard to finance Phase II trials and they would be the owner of RCH4 with IP royalties paid back to the inventor. The investor would own the whole gig and would not be putting money into an unknown.

I do have a clue and know the answer to your questions, but some answers I cannot divulge at the point in time and that would be the same for all RCH4 users. I suggest sending an email to the RC Charity, if we can't or won't answer the specific question. I'll usually tell you if I don't know the answer or cannot tell you.

All the info I know on RCH4 is both from suppliers and my own research on the net.

Greg, the only 'proof' I have is user ccinjersey posted up a letter from ALSWorldwide offering RCH4 on the mndassociation.org forum.

 

[Tessiegirl]

Wasn’t RCH4 they tried to sell. It was a knockoff of Dex. Don’t doubt they would try it but u have the wrong drug.
Folks no need beating a dead horse here. I suppose we will just have to listen to how well the chosen few people are doing until someone backs the drug supplier into a corner.
If u will help me with a petition we will find out if we have a miracle drug for ALS.
I’ll put the petition on line and all u have to do is sign It. Let’s get the ball rolling. I won’t do it without support from u guys.its a lot of work. Let me know.
Marlon can u post that letter where alsworldwide tried to sell RCH4? Appreciate it.