New ALS drug
(`Motor Neuron Disease` or `MND` also known as `Lou Gehrig's disease`)
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A previously unknown problem protein has been discovered
A specifically designed new ALS drug, RCH4, successfully suppresses it
 ​RCH4 is available free of charge on compassionate basis depending on availability and location



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We are an informal charity group of retired scientists with lifetimes of experience in membrane osmosis and immunity research.​ A scientist in our group discovered a previously unknown agent (referred to as `MRCH`) which is produced by the body and which promotes ALS (aka MND).  ​​ ​ We have designed a drug which safely stops production of the problem agent. ​Due to lack of funds to treat PALS, we have never sought publicity or recognition. 
We never ask PALS for money. We fund treatment personally and with help from friends.
As a charity, we also we try to obtain, worldwide, voluntary unpaid domestic help for PALS and their care givers when they are in a crises.

               The dilemma: Nobody wants to know                                                           The moral issue: What to do ?

​There was no effective drug for the condition. The only drug approved for it `Riluzole` had very limited efficacy at best.
 
As there was an urgent unmet medical need and we had discovered what may be a far better treatment, it fell to us
as a humanitarian imperative to do something about it by offering the discovery to those who could bring it to ALS patients to be tested - to prove if it could slow, or more optimistically, maybe arrest the progression or perhaps even eventually lead to some recovery. To do 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. 

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.

“The patronising disposition of unaccountable power”
Hillsborough
With no interest from the Pharma Industry or from the ALS research community, and having exhausted every avenue of potential financial help from the ALS funding sources and others, the question arose as to what we were going to do about it.
 
There were only two options available which raised a moral issue:
 
1/ We must abandon the discovery and move on with our lives doing the things that most people do in their retirement.
 
OR:
 
2/ The funding to treat patients would have to voluntarily come from our own personal resources on a charitable basis.
 
In view of the catastrophic nature of the condition, the lack of any effective treatment and the fact that we were very confident that the drug should work better than anything ever seen before, the decision had to be a foregone conclusion:
We must pay for, and provide the drug, ourselves.
Efficacy comparisons of drugs that do work can be seen HERE
 
The drug is made for us to our specification under contract by a major manufacturer of prescription drugs.
As very large amounts of money have now been spent on developing this drug, and treating PALS free of charge, we will not be able to do further clinical trials in the foreseeable future.
We have no overheads, no paid staff or offices, and we work from our own homes. We receive no material benefit whatever from our ALS efforts.
​All the costs were met by ourselves until the ALS research community who never produced a drug of any sort, untruthfully stated that we are a "SCAM"  HERE  & HERE  Our support collapsed.
Untrue and vitriolic attacks on us by trolls on ALS forums have triggered hate mail for "scamming the dying" and obliged us to remove the `Contact us` link in the menu above.

                How we feel                                                                                                      Our Chief Scientist paying the bills
 
We know things can be very difficult - but we all must try and mentally smile sometimes.....  It`s important.

There is a recently established web site www.RCH4als.com which is intended to provide information for those diagnosed with ALS/MND and is voluntarily sponsored by PALS from around the world who are taking RCH4. If you are taking RCH4 you may wish to join the group.
That web site and group of patients have no connection with us. The word `RCH4` in that domain name is used with the permission of this charity.
Other RCH4 patient experience and outcomes are available at  Patients Like Me
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Famous quotes which are relevant:
"Science ceases to exist when there is a dogma."
 J. M. Lehn, Nobel Laureate, molecular chemistry, 1987.​

​"Institutions will try to preserve the problem to which they are supposed to be the solution. Solve the problem, no job."
Clay Shirky - Social commentator and consultant. 

"Discoveries pass through three stages. Firstly, people ridicule it, then they oppose it, then they say I thought of it first."
Arthur Schopenhauer - Philosopher.
 
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One would expect that possible evidence of a major discovery would be of immense interest to the scientific community

Sadly this is not the case. Rather, incremental improvements to current understandings pass peer review and are readily accepted and readily gain publication – but this is not the case for major breakthroughs. Typically, scientists with significant discoveries are either vilified, or ignored, and they frequently experience wilful obstruction or malice from the research entities and professions.

Examples:   
In 1905 Albert Einstein drafted probably the greatest and best known equation of all time: E=MC2.
He expected (and deserved) excitement and euphoria from the scientific community but was met with a hostile silence.
All the scientific journals refused to publish his paper until Max Plank, the greatest theoretical physicist at the time and editor of the journal Annalen der Physik eventually took notice, gave in, and published. The rest is history.  
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Cambridge University refused to teach Isaac Newton’s Laws for 40 years after he developed them - at Cambridge ! 
On reading his book Philosophiæ Naturalis , the academics rebelled as he rationalised the physical laws other than what they believed in. They had been teaching the wholly incorrect `Heliocentric model` for years.
To avoid damaged professional egos, the work of Newton was suppressed within the University. After 40 years, those academics in opposition had died and Newton`s laws were finally accepted. In the 330 years since, little in the ego of human nature has changed.
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Dr. Philipp Semmelweis was a Hungarian doctor called the “Saviour of mothers” who discovered, in 1847, that the incidence of puerperal fever (known as `childbed fever`) could be drastically cut by improving hygiene in maternity hospitals. He introduced mandatory hand washing by all doctors in his clinic prior to examining each individual patient.
This immediately reduced the appalling fatality rate among all mothers from 25% to1%. This was extraordinary, proving that the cause of the deaths was infection carried on the examining doctors hands. The doctors were in fact, unknowingly killing their patients.

Nobody believed him. He was vilified, ridiculed and ostracised by the highly esteemed medical profession. He lost his job at the maternity hospital where he worked. After his leaving, the death rate among mothers immediately returned to 25%.
The ensuing witch hunt against him tragically caused him to die in a mental hospital to where they had him committed. It remains a stain on the reputation of the profession.
Today, the “Semmelweis effect” is a metaphor for the reflex-like tendency to reject new evidence or new knowledge if it contradicts established norms, beliefs, or dogma, or threatens the professional ego of “key opinion leaders” who previously published statements shown to be incorrect by new evidence.
This new free of charge ALS drug RCH4 appears to have far better efficacy in slowing progression of ALS than any seen before, yet it has likewise been ridiculed and ignored by those who have never slowed the progression in anyone - and charge money for not doing so.
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Sir Alexander Fleming discovered Penicillin. The Medical Profession largely ignored him and continued to promote the Sulphonamide drugs (one fifth the efficacy of Penicillin) for 14 years during which time countless millions died from otherwise treatable infections. Then in World War ll, the American Army realised that as millions of US young men would have to assault the beaches of Europe and the Pacific, something better was needed to treat wound infections which caused 64% of the deaths in WW1 casualties. The army started to produce Penicillin in 1942. No thanks to the Medical profession or the Pharmaceutical Industry who had ridiculed and suppressed Penicillin due to vested interests, and the NIH (Not Invented Here) syndrome.
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Example the discovery of DNA by Crick & Watson and the unfortunate Rosalind Franklin who they cheated. At the time, she was ridiculed for her ideas, but she had solved the mystery of the double helix. Unknown to her, they copied her famous `Picture 51` from an X ray camera she designed and built herself, which for the first time characterised the double helix of DNA. 
Crick and Watson rushed to publish and were awarded the Nobel Prize.​ 
Rosalind only got a footnote in history.
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For generations, peptic ulcers were believed to be caused by stress, etc., and were commonly treated (unsuccessfully) with antacid preparations which suppressed the immediate symptoms but did nothing to cure the problem. In 1982, two Australian scientists demonstrated that the problem was in fact a bacterium, Helicobactor Pylori, which was treatable and could be cured using a protein pump inhibitor drug and an antibiotic `Amoxicillin`.
This was ignored until the treatment eventually became accepted worldwide twenty years later. Meanwhile, millions suffered.
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One must ask why has this also happened to ALS / MND research and development.