New ALS drug
(`Motor Neuron Disease` or `MND` also known as `Lou Gehrig's disease`)
You can edit text on your website by double clicking on a text box on your website. Alternatively, when you select a 
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



An open letter to Dr. Steve Perrin the CEO of The ALS Therapy Development Institute
A scam?​​​
​​

In 2016, ALSTDI forum Moderators and contributer members maliciously accused us of lying, making false claims, being criminals and a scam.

Their totally untrue allegations have caused the collapse of this charity who for years have treated PALS for free.

We wrote to Dr. Perrin 5 times between October and December 2016. He replied twice, once untruthfully.

From the following, a reader could ask which may be a scam, ALSTDI or the RCH4 Charity Group?

........................................................​

Letters to Dr. Steve Perrin.  The CEO of ALSTDI


Dear Steve,
 
I would appreciate it if you would reply to emails. For your convenience, original exchange of correspondence is copied below.
 
Also, we would be most interested if you will please explain:

A/ You have more executives than laboratory staff.
 
B/ Your most recent mail shot campaign appeals for an extra $11 million to get your AT-1501 to Phase l clinical safety trial.
How do you justify that figure?
It cost us $337,000 for a Phase l clinical safety trial. Exactly the same thing.

C/ You claim in the journal `Nature Genetics` you got scientific statistical significance of efficacy in your mouse study,
(p=0.0413, p=0.0038. p=0.0043)
whereas in your mailshot, the data shows no significance whatever.
(p=0.881, p=0.122, p=0.346) 
 
Thanking you Steve in anticipation of your explanation of the foregoing.
 
Richard
 
RC Charity Research Group

======================


Post Script: Charts not included in original letter to Dr. Perrin

   ALS Therapy Development Institute: never a successful new drug                                           RC Charity Research Group
​​​​For $1,000,000 the RCH4 charity could treat 1,200 PALS per month.

​End of post script


------------------------------------------
Steve, further previous mails to you are copied below. Before your ALSTDI latest public appeal in December 2016 asking for extra donations of $11 million in addition to your normal funding of $1million per month, on November 18th 2016, I wrote the following to you.
Yet again you failed to reply:
-------------------------------------------
 
Dear Steve,
 
You have not replied to my last email of three weeks back and you have taken no action.
I copy the email again (below) with addition.
 
You said:
 

Richard you are missing the point.

Eric [Valor] is NOT a moderator on our forum. He is a participant with a voice like any other person.
 
Steve, that is untrue. He is.
If not misinformed, do not lower yourself to the level of Mr. Valor. You are the CEO of ALSTDI. 
 
Mr. Valor stated (He posts as "ENV"):
"I declined to publish...........  I could have done the same..... on the TDI forum because I am a moderator there (1 of 2)." 
https://www.patientslikeme.com/forum/als/topics/145055?page=2&prompt=condition_infos_complete
 
If he is just a participant, how then can he lock the threads?
http://www.alstdi.org/forum/yaf_postst55773_A-new-drug-has-been-stopped-by-ALS-Untangled.aspx#415461
http://www.alstdi.org/forum/yaf_postst55776p2_a-new-drug-has-been-stopped-by-als-untangled.aspx

 
If he is just a participant, then why did Mr. Goldstein not do anything about his outrageous, untrue, and libelous statements?
Moderators must, by definition, be neutral.

 
Our forum is open to everyones’ opinion.
 
Opinions yes. But not libelous statements. You state below that it is your forum and accordingly you are legally responsible for libel.

I have been called hateful names on my own forum for not developing treatments that the ALS community thinks are viable strategies.
 
Steve, you and I are in very different positions. You continually ask for donations in an ongoing major marketing operation at great cost and get paid $millions for your work.
You have never developed a drug of any sort or successfully treated anyone at any time.
 
We have never asked the public for money at any time and always gave our work for free. We have developed a drug and successfully treated patients around the world free of charge for years at our own cost when we had the money - a tiny fraction (2.5%) of the funding available to you.


The real point is publish your work if you don’t want to be scrutinized.
 
Steve, we always avoided publicity, and never gave any information. Our money was given to a humanitarian cause and as no public funding or taxpayers purse are involved, we are not obliged to do so. The relationship between patients and ourselves is a private matter and nobody else's affair.
We operated for years with outstanding success without scrutiny with very little money. Then your Moderator Mr. Valor found us 6 months back in April 2016 and published sensational "SCAM" headlines before even contacting us. Everything collapsed.
 
Otherwise put up with people that don’t believe the claims.
 
What claims?
Again I repeat: We have never made any claims about anything at any time.
Please tell me where we have made any claims Steve.
www.als-new-drug.com

 
ALSTDI have always been obstructive to us. Back in 2011, we asked ALSTDI to quote us a price, and we said we would pay, for a small murine pilot experiment in SOD1 G93A & G37R transgenic mice to compare RCH4 to Riluzole.
ALSTDI first refused, and when we pointed out that it had a duty to enlarge the library of knowledge about ALS, came back and quoted us $256,000.
Outrageous.

We then complained to you personally as the CEO of ALSTDI. 
You replied:

As I’m sure you can appreciate we can’t cover the costs of these experiments right now. We have 24 other compounds that maybe effective treatments for this disease that we have already committed to testing. I’m sure you can appreciate that we just don’t have unlimited budget and resources.

You ignored our offer to pay the cost. You did not wish to help us even though we were willing to provide the mice and pay for your services - but not the $256,000 ALSTDI asked for.
A premier laboratory in the USA did the complete work (including histology) for $68,300.

Your ALSTDI Moderators Mr. Valor and Mr. Goldstein have used your forum to destroy us by accusing us of being "liars", "criminals", "facing long jail sentences", "scammers", "great reservations about the RC Group" (us), "the substance RCH4 may be a water placebo", and: "RCH4 is certainly a GM6 knock-off".

Everything collapsed and brings the end to free treatment of PALS with our drug RCH4.

Mr. Goldstein has also locked the following threads denying RCH4 users the right of reply:
This extraordinary story and the drill-down of ALSTDI accounts will be of great interest to the mainstream Media starting with the fact that ALSTDI has more executives and administrators than qualified laboratory staff.

There are many other facets about ALSTDI to interest the ALS Community, the public, and charitable donors - including allocation of funds, administration and marketing costs and conspiracy, i.e., the fact that ALSTDI is linked to ALS Untangled   in that their drug review panel includes yourself, your malicious Mr. Valor, your Mr. Goldstein (neither who have any medical qualifications) and Dr. Bedlack (who now has had formal complaints filed against him with his Licencing Board over his conduct relating to his attempts to suppress our drug `RCH4`, by repeatedly refusing to publicly acknowlage that he has been provided with proof that this charity is not a "SCAM" and his relationship with your Mr. Valor).  
Then there is the matter of yourself who has been obstructive to a voluntary charity successfully treating patients free of charge with a new drug for years when they could afford to do so - while you had no drug and still have none after all the charity $millions you have been given.

"Institutions will try to preserve the problem to which they are to be the solution. Solve it, no job."
(Clay Shirky - Consultant and commentator)

This is a very sad injustice to an innocent group of people who have given years of their life and their children's inheritance to find a better treatment for ALS.
Far more than ALSTDI has ever achieved.

I continue to believe that you are misinformed about your forum Moderators and unaware of the activities within your organisation. 
I am confident that after investigation, that you will take immediate action by replacing your Moderators, and deleting all of their libelous and inappropriate postings.
You must publish your remedial actions by posting an apology on your forum to the PALS who have been deprived of their RCH4 treatment. 

You now have a decision to make.
 
We reserve the right to publish this email.

Thank you Steve.

Richard
======================

FYI: I copy below my original first email to you on October 24th 2016:
​..................

Dear Steve,
 
Unfortunately your forum is being used as a platform for malice and libel.
 
Your Moderators have ended availability of a novel ALS drug.
 
We are a voluntary research charity comprising of retired immunologists, molecular biologists and medical doctors focused on ALS who have been privately treating PALS around the world for some years, free of charge, with a novel molecule RCH4.
Over decades of patient-years of treatment, there appears to be outstanding statistical significance of efficacy.
 
You may not be aware of the wholly unacceptable conduct of the two Moderators of your ALSTDI forum. They are Mr. Eric Valor and Mr. Rob Goldstein. The latter is an employee of yours.

 
By definition, a Moderator must moderate between people, i.e., be neutral, and if he/she wishes to express personal views they must not be a Moderator but instead be a contributor.
 
................
 
The issue:
Mr. Goldstein and Mr. Valor are exercised by the fact that this privately funded charity group (we are not a company as Mr. Goldstein states) do not release private data. We spent millions of our own money. The pre-clinical and clinical data is our own personal Intellectual Property.
The efficacy or otherwise of the drug is not the issue.
 
The issue is the hostile activities of your Moderators, generated by their erroneous expectation that they have a right to be provided with private information and data belonging to others.
 
The fact that we do not publish detailed data, results in a vitriolic hate campaign of untruths on your platform and elsewhere, resulting in the collapse of our funding.
 
Our pre-clinical work, toxicology studies, our years of clinical data and what we do, is none of their business.

 
Your Moderator Mr. Eric Valor:

He is an arrogant self-opinionated person without any relevant qualifications, who published a libelous and malicious headline about us last April 2016:
 
"Breaking News! A-NEW-Drug A-NEW-SCAM"
 
Our charitable funding instantly collapsed, ending support for the patients we have been treating.
www.als-new-drug.com/bedlack
 
Patients who have been on this drug ranging from months to years have protested on your forum about the conduct of your Moderator Mr. Valor. When he is taken to task, he, your Moderator, makes a vitriolic diatribe and then locks the thread, denying any right of reply. Totally unacceptable. 
Patients using this drug have started new ALSTDI threads only to be again locked out by your Mr. Valor.
Examples:
http://www.alstdi.org/forum/yaf_postst55773_a-new-drug-has-been-stopped-by-als-untangled.aspx#415461

 
http://www.alstdi.org/forum/yaf_postst55776p2_a-new-drug-has-been-stopped-by-als-untangled.aspx
 
On his own website he has removed patients protests and independent postings questioning his motives. This devious and malicious behavior is unbecoming of an ALSTDI Moderator. 
http://www.ericvalor.org/als-new-drug-new-scam/
Your Moderator uses your forum, and elsewhere, to accuse us of being International drug criminals facing decades of imprisonment, being liars, alleging the drug RCH4 is a saline placebo, our monthly patient report form is only a copy of the normal PALS scheduled ALS clinic visits data, and the requirement for patients to have medical measuring instruments to complete the form is "false".
Attached herewith is an actual de-identified monthly monitoring report form for your inspection.
You will see that Mr. Valors statements are totally untrue.
He knows it, as he had previously procured a copy of the report form.
 
Mr. Valor has been reprimanded by many, including the Moderator of another forum as follows:
"Eric, for the record, you are also overstating your biomedical education/experience, and I bring that up only because there are people here that you are trying to shock and awe, they shouldn't trust your conclusions."
 
And another occasion:
"All due respect, Eric, you know I value your work, but since you had already declared yourself rather emphatically about RCH4, ALS-U should've found another investigator".

 
And another occasion:
"Eric overstepped, no doubt".
 
A former Director of the US National Science Foundation (who has no connection with us) has publicly criticized his conduct in no uncertain terms and requested him to cease his malicious campaign against us on your forum.
 
Need I go on?
.................
Last April 2016, Mr. Valor was told by the principal person of ALS Untangled, Dr. Bedlack, to recuse himself from the RCH4 "investigation". However, five months later he still continues his unabated vitriolic hate campaign against us.
The man is using your forum as a platform for his activities. He is your ALSTDI Moderator.
 
Steve, the conduct of Mr. Valor, who has been variously described by others as an obnoxious character, is despicable. 
..................

 
Your Moderator Mr, Rob Goldstein:

He states on your forum: "My posts should not be interpreted as that of the Institute or its scientists. If I speak for myself I will state that."  As a Moderator, it is completely irregular to express his own views. If he wishes to do so, he must stand down as Moderator and participate as a contributor instead.
 
His conduct as a Moderator, like Mr. Valor, is also wholly unacceptable.
Mr. Goldstein`s overt hostility to RCH4 is unwarranted and biased in the extreme.
 
His statements that he has great reservations about the RC Group (us) and that the substance RCH4 may be a placebo, are intolerable for a Moderator. Unwarranted statements made without any evidence whatever.
 
For the record, we have always avoided publicity as we never had sufficient funds to treat more PALS than we did. From time to time, if we had funds to treat more, we put up a website, then took it down. We never wanted the attentions of your Moderators who have delivered catastrophic blows to us and to our PALS friends who we had been treating around the world - including the USA.

 
Example: The following thread drew attention to this great scandal where clearly malicious interests have destroyed the future of a novel ALS drug which appears to demonstrate notable slowing of the ALSFRS-R score progression. The statistical significance over years of treatment is currently p=0.0008. 
 
The relevant thread:
http://www.alstdi.org/forum/yaf_postst55539p2_a-new-drug-has-been-stopped-by-als-untangled.aspx
 
Mr Goldstein locked that thread. It was critical of his colleague Mr. Valor.
Is there a common denominator?  Yes. 
They are both members of the drug review panel of ALS Untangled. Neither are medically qualified.
Their Superior, Dr. Bedlack, the Principal person of ALS Untangled, has now had formal complaints filed against him with his Medical Licencing Board over his involvement in this RCH4 witch hunt.
 
Statements Libelous in law:
Mr Goldstein forcefully condemns us for making efficacy claims and misleading readers of our web site.
This is totally untrue.
 
He stated on your ALSTDI forum that he had read it 4 times to be sure he did not miss anything.
Then he chose to, and completely out of context he selectively quoted - for example:
"It will probably slow the progression of your ALS".

He omitted the immediate previous words:
"On the basis of the current limited available evidence at this time ( ~ 3,000 doses)"  it will probably..... etc.
Note the first letter of the word `It`. The original lower case `i` has been changed to upper case `I`
 
He also conveniently omitted to mention, appearing in a banner headline on the same page, the following words:
"We must rely on the monthly monitoring reports from our PALS friends in eight countries over some years, the accuracy of which we cannot independently verify.
Accordingly, we make no claims about efficacy.​​​"
Further down our page appear the words: "We make no claims of efficacy", "It may not help you", "Do not expect a cure", "This must be considered as an unproven treatment" and later down that same page: "There are no guarantees or assurances".
 
Where are the claims being made?
What is misleading?
 
Refer to those words and the data chart on that same web site page where Mr. Goldstein states that:
1/ we make claims and 2/ we are misleading.
www.als-new-drug.com

 
For what it is worth, the evidence and p factor shown are all correct and accurate as possible as of last month, September 2016. The data source are the patients own monthly monitoring reports.
(If you are interested, another chart is attached herewith for your private information: A de-identified chart, validated by the patient`s Neurologist. This familial case is of significant interest as it relates to homozygous identical ALS triplets and their mother).
 
Mr. Goldstein ends this particular attack on us with:
"No data, No contact information...... two red flags for me"
http://www.alstdi.org/forum/yaf_postst55776_a-new-drug-has-been-stopped-by-als-untangled.aspx
 
However:
He omits to mention that there is an explanation for no contact information on the web site.
Refer to: www.als-new-drug.com/drug-availability-cost
Reason? The unending avalanche of hate mail for "scamming the dying".
Where did this start? Your Moderator Mr. Valor. Then exacerbated by your Mr. Goldstein.
Mr. Goldstein`s function is to moderate and control contributors, not to use your platform to promote his own untrue and biased views.

Mr Goldstein`s postings are libelous. 
 
Steve, ALSTDI has a reputation to maintain but it`s forum is an embarrassment to your Institute.
There have also been other issues raised about it but not relating to us.
This adverse publicity is unhelpful for you and can impact public image and perhaps donations.
 
Those deprived of RCH4 hope your Moderators, Mr. Goldstein and Mr. Valor, be urgently replaced.
 
Thank you Steve and I look forward to your reply.
 
Best wishes
 
Richard
RC Charity Research Group
 

Attachment herewith for your information: De-identified RCH4 patient monthly monitoring report