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.
We never ask PALS or the public for money. We always funded treatment personally and with help from friends. As a charity, we also try to obtain, worldwide, voluntary unpaid domestic help for PALS and their care givers when they are in a crises
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 stop 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 ALS Association Chief Scientist Dr. Lucy Brujyn and the MND Association Head of Research Dr. Belinda Cupid. We were ignored.
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.
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:
We must abandon the discovery and move on with our lives doing the things that most people do in their retirement OR
The funding to treat patients would have to voluntarily come from our own personal resources on a charitable, humanitarian 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 the only drugs that may or do work can be seen on the About RCH4 page.
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 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. We have no beneficial interest in, and do not own, the IP.