Old 07-26-2018, 07:27 AM #211 (permalink)
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Default Re: Still here thanks to RCH4

Drugs are proved in costly clinical trials, not labs. They don`t have the money
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Old 07-26-2018, 10:58 AM #212 (permalink)
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Default Re: Still here thanks to RCH4

Thatís no excuse Jenny. They will never have the money to provide the drug to all ALS patients until they get proper backing. Sell shares on Wall Street. Iíd sure invest. Most pals would.
What good is a drug for ALS if the patients canít get it?
Thanks fo your input.
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Old 07-26-2018, 11:20 AM #213 (permalink)
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Default Re: Still here thanks to RCH4

Sorry Jenny,but I have a follow up question for u or anyone else that’s receiving the drug... What are your suggestions on how to fund the charity to make the drug available to all of us?

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Old 07-26-2018, 05:09 PM #214 (permalink)
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Default Re: Still here thanks to RCH4

Hi Tessiegirl. How about an introduction ? You have thrown yourself into this "Still here RCH4 " Thread with some guns blazing.. The fact is that the ** Charity** they are helping peoples, not enough to please everyone but everyone can look on the site and anyone can apply when or if the "contact us" reappears ? That some go on to that RCH4 site and try to pick fights and or seek to undermine in some way on the " contact us " Link has caused it to be removed. If it comes back by all means apply.
To market a new drug over $1B ? and maybe 12+ years ? Also big Pharma or similar control ? No benefit for the placebo folks or the control group Folks during any trial or even the trial folks after the trial and maybe 12+ Years ?.. and never ever for free right ? Best luck all .. TIANDB

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Old 07-26-2018, 06:00 PM #215 (permalink)
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Default Re: Still here thanks to RCH4

A reminder to keep the discourse civil when responding to questions about this substance. Please leave the conflict and mentions of other forums off this thread.

The ALS Forums are not connected in any way to any other forum or organization- challenges, arguments and discourse carried over from elsewhere will be removed without further notice.
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Old 07-26-2018, 06:36 PM #216 (permalink)
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Default Re: Still here thanks to RCH4

Sorry if u mistook my intent. I was simply asking how to make the drug obtainable to all of us. What are your thoughts on that? I didn't mean to rattle any cages.

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Old 07-26-2018, 08:56 PM #217 (permalink)
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Default Re: Still here thanks to RCH4

To raise over one billion dollars isn't impossible but not the easiest task in this world. The charity has proven to me and others they are not ignorant people. However, the fact that it slows progression more so and with more PALS than any other treatment for ALS EVER with zero reported side effects, yet has received so much negativity mystifies me.

In my opinion, the first step is for people to stop with the negative remarks, comments, etc concerning the charity that provides it to us and RCH4. Especially since all the negative press and comments I've read all have come from those who have no experience with it/them and a lot who have never even read the charities website completely. Radicava was global news, Brainstorm's efforts was global news yet neither have proven results in the majority of PALS treated.
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Old 07-26-2018, 11:08 PM #218 (permalink)
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Default Re: Still here thanks to RCH4

Hmmm.

There are 2208 billionaires. If each one gave one one-hundredth of one percent of their wealth to RCH, RCH would have a billion bucks.

For those billionaires, it would impact them less--much less--than if the average Joe like me and you gave up $5. A latte. Meaningless bucks, even for you and me.

There are 1215 individuals who could give a billion dollars right now, and still have at least another billion remaining to keep them comfortable.

Can the RCH people not afford the postage stamps to ask 2000 people for a couple meaningless bucks?

Just makes me wonder why RCH calls itself a charity, but doesn't ask for charitable donations.


No snark. Not criticizing. Just wondering.
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Old 07-27-2018, 12:56 AM #219 (permalink)
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Default Re: Still here thanks to RCH4

Whoa! WT, you don't have the evidence to cite "...the fact that it [RCH4] slows progression more so and with more PALS than any other treatment for ALS EVER with zero reported side effects." There is no such thing, not even among the currently-marketed rx for other conditions that have been trialed in ALS.

Any drug powerful enough to slow ALS will have side effects, drug interactions, competing risks, just as drugs for MS, stroke, cancer do-- riluzole and edaravone, for that matter.

If no one on RCH4 is reporting any side effects, either the data collection instrument isn't designed to elicit them (and that is what a real trial with clinical exams would do as well), or we must seriously call its activity into question. But what is there to question, anyway? We don't know what "it" is.

At any rate, there are no published data relative to efficacy, safety or tolerability. Please don't substitute hope for evidence. This thread is to report your own personal experience. As you may have noticed, we eschew commercial cheerleading on these forums for any product, and don't bring up the "charity" thing again, please. I can give away poison and you would rightly be upset if I peddled that here.

Are you privy to aggregate unpublished data? Your own exposure is only a few months as I recall. That's simply not enough time to establish a significant difference from placebo for anyone, even if FDA-approved data collection were being conducted, which it's not.

Please don't take these comments as tit-for-tat for the untruths you associated with my name earlier in this thread. Here, we speak our own truths, without parroting others'. If you don't want to contribute on those terms, don't.

The fact that you and other frequent flyers in this thread don't contribute on other topics or share your progression in any respect beyond praise for one aspect of your regimen, speaks volumes about the cheerleading quotient as I see it, and only contributes to doubts about the baseline personal data that you are using to tout the virtues of RCH4.
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Old 07-27-2018, 02:24 AM #220 (permalink)
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Default Re: Still here thanks to RCH4

In re "BrainTrust," [sic], J, assuming you mean Brainstorm, yes, they're following the steps that take years to get regulatory approval, because that:

--Will enable insurance to reimburse for the stem cell procedure, biomaterials and visits for followup
--Will help assure PALS that benefit exceeds risk, in the aggregate, for the indicated population (note that contrary to a frequent "right to try" narrative, some ALS treatments that showed early promise have since been showed harmful)

Not sure how those got to be bad things... you cite money as a barrier for development, but having worked in pharma, if there were money to be made here, and the RCH4 had shared good early data, they'd have a deal by now. There is no conspiracy to hide ALS treatments, as the approval of edaravone, likely efficacious only for a niche population of PALS, demonstrates.

But without reimbursement, anything that's not free costs PALS the full boat. An injectable is often pricey because production is not cheap.

So you can have a secret small cadre of users, you can have a wing/prayer supplement of uncertain potency/purity or you can have a public population that is reimbursed for something that's regulated. What you can't have is something that works great, is free to large numbers and is secret still.
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Old 07-27-2018, 04:31 AM #221 (permalink)
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Default Re: Still here thanks to RCH4

Yeap, this is why 99% of RCH4 users don't come forward and don't post on other topics either. We state positive things and are told We are liars and have no proof by people who are not familiar with the drug or that haven't read the charities website.

Goodbye....again.
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Old 07-27-2018, 08:10 AM #222 (permalink)
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Default Re: Still here thanks to RCH4

Quote:
Originally Posted by WeirdTim View Post
Yeap, this is why 99% of RCH4 users don't come forward and don't post on other topics either. We state positive things and are told We are liars and have no proof by people who are not familiar with the drug or that haven't read the charities website.

Goodbye....again.
. You keep telling us to read the website . Tim I have.. several times. No where in that website does it give a inkling of how they are going to move the drug forward. No where in the website does it give information on a game plan.
No one is attacking you. All of you ď users ď get very confrontational when asked a question about RCH4..
You give excuses why the charity doesnít want to trial the drug. Trials are to expensive, or it takes years for approval..
Thereís a reasons for this process . Think about that.
.. I asked the simple question on your thoughts how to make the drug available to all ALS patients. .I asked what you thought the charityís game plan was. I asked you how they could move it out of the shadows into the limelight.
They sure canít do it one person at a time.
Doesnít make a lick of sense.
We simply want to know more about the drug. Are they able to manufacture it in quantities to keep up with the demand? Is it safe? Are they reputable people distributing this stuff ?
So many questions and all we get is confrontations.
Hey if you folks donít know? Simply say that.
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Old 07-27-2018, 09:27 AM #223 (permalink)
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Default Re: Still here thanks to RCH4

[QUOTE=Atsugi;444886]Hmmm.

There are 2208 billionaires. If each one gave one one-hundredth of one percent of their wealth to RCH, RCH would have a billion bucks.

For those billionaires, it would impact them less--much less--than if the average Joe like me and you gave up $5. A latte. Meaningless bucks, even for you and me.

There are 1215 individuals who could give a billion dollars right now, and still have at least another billion remaining to keep them comfortable.

Can the RCH people not afford the postage stamps to ask 2000 people for a couple meaningless bucks?

Just makes me wonder why RCH calls itself a charity, but doesn't ask for charitable donations.


No snark. Not criticizing. Just wondering.[/QUOTE Pretty hard to give when you donít know the recipients. Pretty hard to give to a charity if they donít take donations. Seems odd to me.
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Old 07-27-2018, 12:51 PM #224 (permalink)
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Default Re: Still here thanks to RCH4

<long quote removed--mod>

No guns blazing. I just asked couple questions. But ,,,trials doesn’t take 12 years . Seven at the most.. if u have right to try u can access the drug as long as it has passed phase one safety criteria and a doctors approval. I doubt very seriously if a trial costs 1 billion dollars. I
But say it does. They would recoup that in no time. ALS is big business. Especially when combined with all the other MND.
As for as a introduction? I’ve had ALS for 14 years. I’ve been around the block a time or two.
Do u have a guess on how RCH4 is going to be made available to the general ALS population? If u don’t know please just say so..
Forgive me my short sentences,mistakes in typing, . I’m using my thumbs. I tend to abbreviate a lot.

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Old 07-27-2018, 01:07 PM #225 (permalink)
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Default Re: Still here thanks to RCH4

The charity offered it to both the pharma companies and the ALS research people as a gift. Nobody wanted it.
They don`t have the money to do another trial. What more can they do?
Please read: About

Just to be clear, I am just a PALS who is benefiting from RCH4 and I have no connection at all with the charity who provides it to me for free.
Here is my data as of week ago:

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