Still here thanks to RCH4

[nickrr]

I haven’t posted for a while and I wanted to update everyone, I have been on RCH4 since August 2017 and this drug has reduced my progression dramatically, I still get it for free and get all the support and help I need from the charity.

I still can’t believe that people think it could be a placebo effect, if it was weeks or couple of months I would agree but I have been on it for almost a year now and others have been on it for many years with same results.

Attached is a letter I have posted previously from my Neurologist that confirms I am on RCH4, I have ALS/MND, and my ALSFRS.

Tillie, The charity has been helping people for many many years now and they have saved many lives, they don’t pick and choose who they give the drug to and they will give it to anyone affected by this disease as long as they can provide a letter from the doctor and prove they have ALS, but I guess this is a lot to ask. There are many many people who have come out on these forms to say they have been approved for RCH4, I can’t recall anyone who has been denied RCH4.

As Marlon mentioned above, RCH4 need to go through clinical Trials which the charity does not have the money and will need a sponsor, I hope everyone will give RCH4/charity all the support it needs and deserves.

 

[KarenNWendyn]

I come here in peace and am also happy for those who are receiving it with benefit.

The RCH4 website says “The drug is made for us to our specification under contract by a major manufacturer of prescription drugs”.

This statement raises questions for me: I doubt this “major manufacturer” (presumably a pharmaceutical company) would generously supply the drug to the charity for free, so I presume charity funds are helping to defray the manufacturing cost.

Since the experience of those receiving the drug has been so positive, I would think that the pharmaceutical company involved would come out of the closet and sponsor a clinical trial, market the drug to investors, etc. it seems very odd to me that this has not happened. Pharmaceutical companies usually have fairly deep pockets.

Without corporate sponsorship, this whole experience will probably fade into oblivion, and that would be a loss to the ALS community if the drug is as promising as you all make it sound.

 

[southernmichigan]

Sorry Greg that is between my mother and her doctor.

 

[southernmichigan]

Karen, I believe that the manufacturer have already donated once already to the RCH4 group lets hope they will do it again!!!!!

 

[Stephanie52218]

I am thinking that information could be found about RCH4 and its distributors through one or more of the orphan drug registries. Tim has mentioned that it has orphan drug status.

In the US, the FDA approves all orphan drugs. For the indication ALS, the FDA lists only riluzole and edavarone as orphan drugs. https://rarediseases.info.nih.gov/diseases/fda-orphan-drugs. So it hasn't got orphan drug status in the US, but I believe people are getting it from Europe.

The EU has a very lengthy list of orphan drugs at this website: Register of designated Orphan Medicinal Products (alphabetical)

On this page, I spent about 15 minutes visually scanning the central column in the table which has the name of the disease for which the drug is intended. There were no less than 16 orphan drugs designated as treatment for ALS. Some could be eliminated right away: edavarone, ibudilast, and therapies which are antibiotics or are derived from stem cells or recombinant DNA against SOD1 RNA. It sounded like RCH4 is none of these things from what people are saying.

But, for anyone with the time and patience, there is a ton of information about each drug. The left-most column has the drug names, and they are a clickable link that takes you to a page with the name and address/location of its sponsor. On that page there is a link in very small text "Public summary of scientific opinion" and it takes you to a page which explains the proposed mechanism of action of the drug and a lot of other information besides.

I have no more time for it now, but I bookmarked the page for a rainy day.

If there is something out there that is helping people, it would be good to have as much information as possible.

 

[jennyinfrance]

Well said!

 

[Tessiegirl]

RCH4 should bring the drug out to be tested by reputable research labs . They have their patent secured so no one can steal it. There is absolutely no reason to make it available only to a few.
What their thought process is keeping it in the shadows is incomprehensible to any person with ALS. I would advise stay away from until they do.

 

[WeirdTim]

Tessiegirl, have you read the charities website completely? It answers many questions people have and in my experience with both taking RCH4 and corresponding with the charity is very accurate. Great, compassionate people and is saving my life. My loved ones and I are incredibly grateful to them.

Main

 

[Cherise77]

WeirdTim - can you give me the email address you use to contact the charity? There is no way to contact them from their website. Seems odd if they’re trying to help PALS like my Dad but I have no way to get the drug.

 

[Tessiegirl]

Tessiegirl, have you read the charities website completely? It answers many questions people have and in my experience with both taking RCH4 and corresponding with the charity is very accurate. Great, compassionate people and is saving my life. My loved ones and I are incredibly grateful to them.

Main

. I’ve read it backward and forward .
I’m very grateful for you and all the others who have been lucky enough to receive it.
What about the rest of us Tim?
The only way all the other people with ALS have a chance to get it is if the manufacturer and the charity to come out of the shadows .
As long as the RCH4 charity remains unknown and unwilling to get their drug through a phase 3 trial it’s all just a waste of time for the rest of us.
All of you recipients know that.

 

[Tessiegirl]

The website doesn’t say how they are going to move the drug forward. What is their game plan for making it available to the rest of us? Do they have one? If they do they need to explain what it is. Their only reiterates what we already know about ALS.
They clearly don’t have the funding to do it now because they have to pick and choose who receives it.
Lack of funding is not a good argument. . If it works they will have more backers than they know what to do with.
The only way for them to advance the drug is by the trial process. They don’t need ALS UNTANGLES approval. Take it to whoever they want.
We can’t and shouldn’t take the word of a few individuals.
I would like to hear from all the ones that are on the drug as to what they think needs to be accomplished to advance the the process so we all have access to it.
Jenny it’s your thread , can u kick it off?

 

[WeirdTim]

Hello Cherise77, please check their Contact Us portion of their website. They only put a contact form up when they can supply new users. It was a few months before I found the form earlier this year to contact them. The form was up last month as I know a few people who are now receiving RCH4. Apologize and wish I truly could offer you more. Just encourage you to check their site. They do not discriminate based upon progression.

 

[Cherise77]

Thanks i’ll keep checking and hopefully the contact form will come back up soon.

 

[jsavino54]

Hello Tessiegirl.

Drugs are not tested by laboratories! Labs can only analyze and we already know what RCH4 is, more or less. A chemical analysis and even an x-ray structural study would yield nothing of any use.

Effectiveness and safety testing for any drug must be conducted on actual people in numerous clinical trials. But each trial costs millions if not tens of millions. The RCH4 group is a small charity, so where is that kind of money to come from?

You said "There is absolutely no reason to make it available only to a few." That would be true if they were a pharma giant and could make vats of the stuff without even breaking a sweat, but they are not.
Again, where does the money come from?

For reasons none of us users can understand, the RCH4 group has faced stiff resistance from some established players in the ALS field whenever they tried to present their findings. How can the experience of some dozens or possibly a few hundreds of users who obtained benefit and had no side effects be ignored? I for one wish there was some objective, neutral body to present evidence to and get a fair hearing.

I contacted over 10 users during my own due diligence research on RCH4 before I started using it. One fellow said "I owe my life to the stuff". That was good enough for me to take the chance and I'm glad I did. RCH4 hasn't halted my progression, but it does seem to be slower.

Actually I'm also glad the charity is small. If they were big and well-funded, they might keep a tight lid on it like BrainTrust just did with their very promising new stem-cell and drug treatment. Without any reason or proof, I suspect their decision was purely profit-driven, and unfortunately it won't finish trials until many of us are already dead. At least we can get RCH4.

With luck and the grace of God, maybe RCH4 will slow my disease down until the stem cell therapy is ready?

best

jim

PS I don't think RCH4 has orphan drug status. That's usually reserved for drugs that have passed Phase I trials. Again, money....

RCH4 should bring the drug out to be tested by reputable research labs . They have their patent secured so no one can steal it. There is absolutely no reason to make it available only to a few.
What their thought process is keeping it in the shadows is incomprehensible to any person with ALS. I would advise stay away from until they do.

 

[jsavino54]

Hello Cherise77

The charity site says the contact link has been removed due to hate mail and lack of funds to treat more people. This has happened a few times in the last couple of years. Keep checking, often. As soon as the link is up, respond and don't waste time. It worked for me.

best

jim