Old 07-27-2018, 12:55 PM #226 (permalink)
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Default Re: Still here thanks to RCH4

Hi tessiegirl. I honestly do not know how it will if ever it will become mainstream ? The presentations were rejected by the ALS community as noted from the website.
Maybe the trials of a new drug are done quicker than over 12 years ? But coming to market takes longer than 7 Years ?
90% of ALS patients have between 3 and 5 Years to deteriorate some small % sadly quicker and some small % have a longer time to deteriorate.. Very sad for all.
Everyone does not agree with the Trial system and tweeks are always being sought. The control group in any ALS trial go about deteriorating along with the Placebo group bar some slight placebo benefit on occasions ? The trial group benefits if any benefits are to be achieved for the duration of the trial and then are usually cut off ? Only 2 Drugs are available after many $B's on mainly failed trials. One drug works for 7% of Pals to extend life some ? the other gives a few weeks extra towards the end of sad proceedings although it may be more beneficial to some ? Both are expensive most especially the 7% one of the only 2.
That the RCH4 drug is being used by a small number who have managed to gain access when the window was open to all who honestly applied is a fact.
As the website explains lack of funding keeps the numbers low. Trolls, intended pickle the water holers and wanna be commercial pick pockets keep the contact window closed. If i win the lottery here in the UK tonight I will deposit some funds. Only 6 Years down the line for RCH4 ? with most Pals gaining Time 84% ?
( 12 Years commercialisation ? your way ? ) Hopefully something good turns up and not to far away and not 2 Expensive.. Peace TIANDB. ( I am a 10% er Under rather than over )

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Old 07-27-2018, 01:41 PM #227 (permalink)
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Default Re: Still here thanks to RCH4

I believe that $1b/12 years applies for taking a scientific discovery (ex. a disease mechanism) through to a marketable drug. The FDA has a 5 step process. The first step, "Discovery and Development", could involve a manufacturer looking at 1000's of different compounds over several years. The second step, "Preclinical Research", involves testing on cells, animals, etc. One could argue that RCH4 is ready for Step 3, "Clinical Research" (i.e testing on humans). Average cost from that point is about $50 million and 6-7 years.

https://www.researchgate.net/figure/...fig1_308045230
https://www.quora.com/How-much-do-cl...for-drugs-cost

But, that is for a typical drug, like for cancer. In that case you need many participants to demonstrate that the drug is more effective, cheaper, etc., compared to existing treatments. I think that ALS trials tend to be smaller and cheaper, ex. Radicava was approved based on a trial of only 135 people.

Of interest, the Duke trial of Lunasin cost only $300,000 and was funded by a philanthropic donation..

I think what is killing RCH4 is the secrecy.
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Old 07-27-2018, 01:54 PM #228 (permalink)
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Default Re: Still here thanks to RCH4

One more comment..RCH4 could be through a Phase 1 trial in a year for a few million dollars. After that, I believe patients could access RCH4 under Right-To-Try.
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Old 07-27-2018, 02:22 PM #229 (permalink)
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Default Re: Still here thanks to RCH4

Ok, another comment. How about treating RCH4 as a supplement?

"DSHEA defines the term "dietary supplement" to mean a product (other than tobacco) intended to supplement the diet that bears or contains one or more dietary ingredients, including a vitamin, a mineral, an herb or other botanical, an amino acid, a dietary substance for use by man to supplement the diet by increasing the total dietary intake, or a concentrate, metabolite, constituent, extract, or combination of any of the aforementioned ingredients." (from https://en.wikipedia.org/wiki/Dietar...on_Act_of_1994)

RCH4 is supposedly a peptide (amino acid chain), so I believe would qualify.
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Old 07-27-2018, 03:48 PM #230 (permalink)
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Default Re: Still here thanks to RCH4

Tessie, as you wrote...

"As for as a introduction? Iíve had ALS for 14 years.".... WOW!

That really isn't much of an introduction...

Many members share their journey to diagnosis.

When it began, how it began, who made the the confirmed diagnosis, what test
confirmed the diagnosis, many say where they go for follow up and or the name of the facility and even the name of their Neurologist.

Anybody can sign in here and put in their Bio... "I have been diagnosed with ALS."

But... members have the right to ask questions. Don't be offended if we do.

But, you having ALS for 14 years... is rare to the rare as ALS is rare.

Please don't try and tell us it is that you have been on RCH4.

That would make RCH4 a miracle drug of the 21st Century.
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Old 07-27-2018, 04:09 PM #231 (permalink)
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Default Re: Still here thanks to RCH4

Quote:
Originally Posted by Clearwater AL View Post
Tessie, as you wrote...

"As for as a introduction? Iíve had ALS for 14 years.".... WOW!

That really isn't much of an introduction...

Many members share their journey to diagnosis.
I was diagnosed by the Mayo Clinic with bulbar ALS. I go to the Charlotte ALS center. My doctor is Dr Brooks. I also go to the Greenville ALS clinic.
About ten years into the disease I was was diagnosed with UMND ALS. In October it will be 15 years.
i live in Inman SC.
My login name is my puppy dogs name. I'm a male 72 years old. I drive ,do all my own transfers ,dress myself all but tying my shoes.
What else u need Al? Lol. No offense meant.
Oh.. I would not touch RCH4 with a ten foot pole

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Old 07-27-2018, 04:51 PM #232 (permalink)
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Default Re: Still here thanks to RCH4

I should add,ALS started with slurring my words . I seen 5 neurologists over a two year period. Each done a EMG .. one done a muscle biopsy. They couldn't diagnose me. Finally went to the Mayo. Stayed a week. They had no problem diagnosing me.
The day I was diagnosed,I ran a mile and played 18 holes of golf at Rochester golf club. I came home and for two years I still played everyday . I lost my speech completely after the 5th year. Then I started falling during my golf swing.. had to go into wheelchair.been there ever since. Fine motor skills pretty much shot but my foot hand coordination is very good while driving. If I had balance I might be able to walk but I am stiffer then a board. Strength about 50% I'd say. I bounce between 29 and 31 on the frs.
bet u wished u hadn't asked now..lol.
Seriously I didn't know where or how to enter all the info.
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Old 07-27-2018, 06:19 PM #233 (permalink)
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Default Re: Still here thanks to RCH4

On RCH4 for four years and has almost stopped progression. I said almost. It works (for me anyway) Someone correctly said here that it will disappear into oblivion if not moved forward. At the very minimum, a phase two trial would be needed to be approved, and maybe a phase three.
IMO a phase two would cost at least $3 million. Clearly they dont have the money. We do not know, but as someone also said here, it is an injection which is much more expensive to make. Further as it is a monoclonal antibody I suspect it costs the charity maybe $800 a month per patient. They tried to give it away as a gift to pharma and the ALS research people and nobody was interested. See the names at "about us" on their site.

Someone mentioned that Dr. Bedlack Lunasin trial cost $300,000. True, but that was/is an open label self reported study, same as the RCH4 charity does. Lunasin was/is not a clinical trial which needs to be double blinded, placebo controlled. Hope this helps.
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Old 07-27-2018, 06:22 PM #234 (permalink)
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Default Re: Still here thanks to RCH4

Tessiegirl,
Welcome! I'm glad you shared your diagnostic path with us. Hope you'll stick around with us on the forum.

Mike, I'm with you 100%. I've had success writing grants and fundraising for the college. It's not rocket science. I honestly believe that someone like Bill Gates or Oprah would give big bucks if contacted. I think Steve Gleason and his foundation could rapidly raise enough funding to bring RCH4 to market if provided transparency.

I'm not convinced that RCH4 is without success. Marlon's wife's story convinced me along with NotBrad's testimony. I think there must be other longer-term success stories.

Also, what happened to the orphan drug status of RCH4? I believe someone posted it had orphan drug status but nobody could find evidence.

As I see it, the bottom line is that the ball is in the court of the owners of RCH4. We can complain, beg, hope, doubt, refute or anything else, but it is their property and their decision if they want to provide any further information.

I do think Marlon's wife's case is something someone should be investigating and following. As he reported it, that is nothing short of a miracle.
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Old 07-27-2018, 06:33 PM #235 (permalink)
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Default Re: Still here thanks to RCH4

Tessie, I humbly apologize.

I wrote down the wrong screen name cross referencing many replies going
back and forth.

Again, I apologize.

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Old 07-27-2018, 06:57 PM #236 (permalink)
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Default Re: Still here thanks to RCH4

No problem Clearwater. I should have listed it . I'm learning the forum what to's and herefores

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Old 07-28-2018, 09:40 AM #237 (permalink)
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Default Re: Still here thanks to RCH4

Hi KimT..
KimT wrote - "It's not rocket science. I honestly believe that someone like Bill Gates or Oprah would give big bucks if contacted. I think Steve Gleason and his foundation could rapidly raise enough funding to bring RCH4 to market if provided transparency."
Here is a copy from the charity web site;
That would require clinical trials (costing millions) to satisfy the Regulatory Authorities.
We prepared scientific presentations and compelling clinical evidence of the efficacy and mode of action of the drug.
Scientific presentations were then made, in person, worldwide, to the major players in the Pharmaceutical Industry.
They showed no interest whatever.
In 2012, the package was offered as a gift to the ALS Research entities. Scientific presentations were, again made in person, to the
ALS research community, including the Chief Scientist of the ALS Association Dr. Lucie Bruijn.
At various times, outstanding clinical data was brought to the attention of other major research players including the
MND Association Head of Research Dr. Belinda Cupid.
We were always ignored and nobody was interested.
​ In general;
Many of the world`s pre-eminent neurologists were contacted and RCH4 was met either with hostility or they failed to reply.​
We tried to get assistance from Globally known Philanthropists, and the ALS funding sources. Repeatedly they declined to help us. ​No more could be done.
What secrecy? What lack of transparency?

Hopefully one day realization will dawn ? With much Hope for ALL .. TIANDB

Last edited by TIANDB : 07-28-2018 at 10:13 AM Reason: Remove some gaps.
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Old 07-28-2018, 09:54 AM #238 (permalink)
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Default Re: Still here thanks to RCH4

TO ALL, From Mike the Mod:

Pls refrain from long quotes or copying pages from other websites.

Our mission and our audience are different from most forums on the net, so we need to operate a little differently.

Since our members often use headgear to read, long posts are physically difficult to read.

Please refrain from either quoting other posts, posting long paragraphs, or copying long lines of texts from other websites.

Thanks to all.
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Old 07-28-2018, 11:19 AM #239 (permalink)
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Default Re: Still here thanks to RCH4

Jim..compounding pharmacies determine ingredients in a drug and produce the equivalent all the time. I use them to reproduce all my expensive medicines. They can do RCH4 easily. Send me a small sample and we will see if they can. Iíll pay all costs.
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Old 07-28-2018, 12:05 PM #240 (permalink)
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Default Re: Still here thanks to RCH4

TIANDB,

I've read the entire website, more than once. At one point there were two web sites and they also had a Facebook page with contact information.

I've corresponded with Richard from the Charity. He gave me some background on the original funding and I have no reason not to believe him.

Has anyone else contacted the agencies, companies, and doctors who have not shown interest or ignored the Charity's offers? I'd be interested in knowing why such a massive lack of interest given the positive results reported by PALS.

If RCH4 really stops progression in a large number of the PALS population, there is no way it would not be funded. Something is missing from this conversation and the only way to find out is for someone to start contacting the "people" who have refused to listen.

As I said before, I believe Marlon and I believe NotBrad. It's not that I doubt any testimony I read. It's the disconnect between the owners of the peptide (or whatever it is) and groups/people interested in finding something that helps PALS.

I'm not bitter that I don't have access to RCH4. I'm thankful that the PALS who are taking it are seeing good results and I hope that it eventually can help a greater number of us.

As to my reference to transparency, I am not referring to what is in RCH4. I'm referring to full disclosure from all sources regarding these offers and refusals between the Charity and the agencies and doctors associated with ALS.
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