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

Dr. Bedlack, his reputation ALS Untangled

​A Dr. Bedlack is the founder and principal person of `ALS Untangled`, a self appointed organisation which investigates new ALS treatments
In 2016, Dr. Bedlack appointed as Lead Investigator, an Internet activist and a moderator of the ALSTDI forum, Mr. Eric Valor, who had already maliciously claimed that this charity who provides treatment free of charge, is a scam in the following headline without doing any research, without contacting us, and without any justification whatever:​

                                                                             Breaking news !  NEW-DRUG - NEW-SCAM

Our voluntary support sources immediately collapsed. A search in Google for "RCH4" explains why. The word `SCAM`.

Mr. Valor has repeatedly refused to publish an apology for his untrue allegations or remove his headline. Mr. Valor added a `?` after the word `SCAM` when Dr. Bedlack spoke to him.  A witch hunt against this charity then spread over all the Internet ALS forums which destroyed us.

A scam?  New?   Our web site back in 2010 appears here:

​Dr. Bedlack has privately written acknowledging that Mr. Valor`s allegations are likley to be untrue but has refused multiple requests to say so publicly. He was not asked to comment on the efficacy or otherwise of the drug.

After years of supporting PALS free of any charge, this is a catastrophe for this charity and the PALS we were supporting​​.

Update March 2017: Dr. Bedlack is now trying to sue this charity. He objects to the content of this page you are reading being put into the public domain.​​
Every word on this page is the truth and can be proven to be so. It was his choice to repeatedly refuse to state publicly (and thus conceal the fact) that he had proof that his ALS Untangled Lead Investigator into our drug RCH4, Mr. Eric Valor, was likely untruthful in alleging that we are a "SCAM".
Wholly unacceptable for a charity who has provided PALS with the only drug that ever worked for ALS, sought unpaid voluntary home help
worldwide when their care givers are in crises and never asked a PALS or the public for money at any time,
This is in stark contrast to Dr. Bedlack and Mr Valor who provide no such service and do ask for money.

Update August 2018: Patients who take RCH4 have written to Dr, Bedlack asking him to take action, however he does not reply to them.

Update May 2019: Dr. Bedlacks `ALS Untangled`had over 1,600 votes for RCH4, the highest number in the history of ALSU. Overnight, there was introduced a new "Factoring multiplier" to reflect the relative importance of each treatment. RCH4 was multiplied by zero replacing it from the top of the list down to number 257 on par with "Donkey milk".
PALS wrote to Dr. Bedlacks employer, Duke University (recently found guilty of fraudently obtaining $112 million of taxpayers money for research) complaining about his conduct.
The multiplier was then modified to `1`, which improved its ranking, but put the significance of RCH4 below that of   "Placebo therapy", and on par with "Ozone", "Sound therapy", "Tea", "Magnetic fields", "Metronome treatment", "Worms" and so on. This extraordinary issue can be seen HERE

​Dr. Bedlack charges his patients without having any drug to realistically slow the progress of ALS, whereas we do have a drug that may do so (refer to table below and chart at page end), and always supported PALS free of charge as a charitable imperative - for no material gain whatever.
Mr Valor subsequently changed his allegation that the charity plan is to scam potential investors. The charity has never sought investors.
Patients taking RCH4 have sought investors to set up ther own patients company to bring it forward to approval. Nothing to do with the charity.

A scam?

Dr. Bedlack

After Mr. Valor`s untrue "SCAM" allegation, the principal of ALS Untangled, Dr. Richard Bedlack of Duke University, was immediately provided with a dossier of confidential files covering years of pre clinical and clinical data (including a study demonstrating life extension in transgenic mice undertaken by a premier laboratory in the USA, and 19 consecutive clinical patient charts to demonstrate that we did not randomly select the best results for him).
These prove that the allegations are wholly untrue.

Sept. 25th 2016: Letter from Dr. Bedlack to an RCH4 patient:
"I have now seen enough information about RCH4 for me to believe it is not a scam.  To me, the word scam implies a purposeful deception and I have not seen that here.  I personally believe there are honest attempts being made to study this product.  For what it is worth, I emailed Mr. Valor a few days ago and told him of these thoughts.  I do not have any control over what he does with this information.
So, in closing, if you and your colleagues really want to get the truth about RCH4 out there urgently, there are some simple things you can do.  You can vote for RCH4 on the ALSUntangled website so that it moves up our priority list, and you can send me information we can use in the upcoming ALSUntangled review."

Dr. Bedlack was asked to publicly state that after seeing the dossier of files sent to him that he believes it is not a scam.
He was NOT asked to comment on the efficacy, safety or otherwise of the drug

October 3rd. 2016: Letter from Dr. Bedlack:
"I will provide you with a signed letter on my official letterhead that states I do not believe RCH4 to be a scam.  You can then post this wherever you want and/or send it to the folks that were sponsoring your use of this drug. 
I will send this letter to you as soon as the leader of your group permanently removes all the nonsense he has written on the Internet about me and my ALSUntangled program (for example and apologizes to me for it."

Nonsence?  Every word on this page is the truth.  
Dr. Bedlack appointed a well known activist as his Lead Investigator who had already made untrue allegations.
Dr. Bedlack was immediately sent proof that his Lead Investigator had published malicious falsehoods.
He wrote the Sept. 25th letter (above) confirming this.
He was repeatedly asked to publish the fact that he was provided with proofs and that he did not believe it is a "SCAM". He refused.
This page was then published to refute the wave of untrue allegations promoted by Internet Trolls which destroyed the reputation of RCH4.
Then he tried to sue this charity for publishing the true facts.
An Apology?  For what?

Dr. Bedlack subsequently discussed or shared some or all of the confidential matter with at least one third party. This is most unprofessional.
His Lead Investigator Mr. Valor stated: 
"the proof sent to Bedlack was a scattered and very sparse collection of tidbits which were interesting" 
"AFTER I published my blog post, I discussed the matter with Dr. Bedlack"
"At the end of our discussion he (Dr. Bedlack) did ask if it would be easier to drop that word (SCAM). I said because of the obstinance of the owner
 and disciples that I will be keeping it until the requested information is delivered."

​Numerous formal complaints by PALS about the conduct of Dr. Bedlack in this matter have since been filed with his licencing authority,
The North Carolina Medical Board.

Notwithstanding the fact that Dr. Bedlack has privately admitted in writing that the statements made by his Lead Investigator are likely untrue, he has been asked to, and has repeatedly refused, to publicly state this. He is guilty of concealment.  

1/ To do so may call into question his judgement in using the services of Mr. Valor who remained a member of ALS Untangled.
2/ He would also wish protect his professional reputation and that of his ALS Untangled investigators.
3/ From the drug efficacy data he has been provided with, he knows what the consequences may be for PALS who will be deprived

The stance of Dr. Bedlack was that the collapse of this charity had nothing to do with him and he could do nothing about it.

He certainly could have. He stood by and said nothing as the charity lost its supporters due to "SCAM" allegations and collapsed.
​He was provided with the requisite documentary evidence proving that his Mr. Valor was untruthful and repeatedly refused to say so.
Dr. Bedlack was not asked to comment on the safety, efficacy, or otherwise of RCH4.
While knowing that the allegations were untrue he still declined to say so in public. His position:

"It has nothing to do with me"
"I never said anything about RCH4"
"I am not responsible for Valor"

This is disingenuous, unprofessional, unacceptable behaviour. An astonishing stance for Dr. Bedlack, a respected advocate for PALS.

Concealment of information material to patients interests is a serious breach of acceptable professional conduct and a matter for the attention of The North Carolina Medical Board who granted his licence to practice medicine (Licence No. 200000183). 

​                                                                                        -----------------------------------------------------------------

​No ALS drug has ever demonstrated such efficacy in slowing the progression.​

​Data early 2016:
Note that this charity makes no claims of efficacy or offers any interpretation of data.