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mich5

Distinguished member
Joined
Apr 20, 2012
Messages
275
Reason
PALS
Diagnosis
01/2012
Country
US
State
west
City
mid
im taking a medicine that is new and not approved, it hasnt been thru clinical trials yet. its called RCH4 Peptide and ive been on it for 9 months. my als has not progressed and im a bit improved. my fingers are moving more (i realize 'more' is a subjective term. in march when my hands were at rest they were in a loose fist and i could only move my fingers in a group to close my fist tighter. now both thumbs and five fingers can move each by themselves - not like a normal person can move their fingers, but you can see them move when i do it. and my tongue is moving more, i can manage my own saliva now.) this medication is given to me at no cost to me. this group furnishes this medication to pals at no charge on a compassionate basis. they have spent their money to develop it and research it. they are ready to take it to clinical trial but dont have the funds. i email the RC Group every month with any questions i might have and to report on my status. more information is available at their website Main

i did not find this website but heard about it from a friend of mine who was taking it, she had no movement of her limbs and she was able to move one finger and one foot after only two months, but she got pneumonia and passed away last year. :-(

if the website doesnt show up here, please pm me if you are interested. please be patient if it takes a bit for me to reply, im using a tobii and if i get several pm's, it may take me a bit to answer.
 
Do you have any other info on them? There's not much out there that I can find.
 
I would like to know more about this.
 
A few things bother me about this:
- it's completely anonymous, "a group of retired professionals"
- they never identify the "newly discovered protein"
- they say they approached the "ALS research community" for funding but no one was interested
 
i understand your concerns. they are still trying to obtain funding to go to clinical trial so i doubt they will name the protein as they still want to protect their interests. because i have a (more than) 9 month relationship with them, im aware of some of the avenues they have pursued with the als research community. they have most often heard that dollars are being put towards gene therapy rather than funding a protein.
 
Have you experienced any side effects? My neurologist is willing to let me try anything.
 
i havent had any side effects.
 
'puter ate my last response...OK, let's review.

They're keeping it a secret because (1) they haven't filed a use patent and still hope to commercialize it? 'Cause if they had IP locked down, no need for secrecy and a lot of reasons against it but (2) they say no one is interested but (3) they have the money to dole out weekly supplies of an "immensely expensive" peptide (but not to uncloak, publish any case reports...anything else?)...and (4) they want to be anonymous to escape the scrutiny/thundering hordes...but (5) they want subject data so (6) they can find a partner/funder but (7) OK, I'm done now. It's all some weird illogical loop.

The science published so far is in lymphoma, T cells, immunology. The rationale relates to PALS' having more glucagon/glutamate circulating. As with all "there's more of this with these people" discoveries, we don't know whether these compounds are chicken or egg -- if reducing them, as this protein would, purportedly, would change the course of the disease once these elevated levels have shown up. For example, in cancer, it's not "removing tumor markers" that you try for, but removing the cancer cells. On the other hand, in diabetes, if we stabilize glucose, we can accomplish something.

Maybe it can pan out. I don't think it will happen a couple of pts at a time, good secrets are hard to keep in real science and they would have to "unmask" to advance this compound, even to outlicense it, if they have any rights to it at all. If they did communicate, publicly instead of behind the scenes, it would only advance their case if there is one... So is it safe/is it effective -- IDK -- will anyone ever know? No bets on that.
 
So is it safe/is it effective -- IDK -- will anyone ever know? No bets on that.

I understand your arguments and they are more than sound. I just contacted them as they are a European company, I can understand the problems they are talking about getting money or recognition. I expect nothing out of this but have nothing to lose, my life? That made me smile.
 
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Mich5,

Very interesting. Thanks for posting this.

Michael
 
on the internet there is no information about this drug, on the website no information appears about the discoverers, doctors or scientists responsible for this peptide. how can we trust them? How can you take an experimental drug with so little information? I'm desperate but try this drug without data it seems crazy. Your you keep taking it? What dose?
 
Mich5,

Very interesting. Thanks for posting this.

Michael
Hello mich5 ,

My father have PALS and I saw your message about als-new-drugs. I already contacted them, and I want to know for how long you have been using this medication and what improvment did you get. Can you give more details on how effective is the drug?

Thanks a lot,

Jean-Roch
 
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