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


                   ALS New Drug RCH4 Availability​​

If you wish to contact us
      
Please provide the following information:
1/ Age and gender (male or female)
2/ How many months since you were diagnosed
3/ Your ALSFRS-R score when diagnosed
4/ Your ALSFRS-R score now*
5/ Your previous or current occupation or profession
6/ Height
7/ Weight
8/ Is your doctor a specialist / consultant neurologist ?
9/ Do you (did you ever) have another serious disease?
10/ Do you have, or had, any allergies (e.g. Asthma)?
11/ Domestic arrangements - partner, carer etc. ?
12/ Are you currently taking Riluzole and / or Edaravone?

*If you do not know what your ALSFR-R score is, we can send a score sheet to you in Microsoft EXCEL format. (Our version requires more information than the standard version).

Note: Because of the amount of hate mail from the ALS community accusing us of "scamming the dying" the contact link may be removed from the menu above.
This is due to the wholly untrue allegations of of the Lead Investigator for the `
ALS Untangled ` organisation in 2016. Also refer to `
Dr. Bedlack` 
The `Contact us` link may be restored in the future, provided that there are no further threats and abuse.
It is totally unacceptable to attack and obstruct the only
charity that has ever provided what may be the most effective ALS drug ever seen, free of charge, and may extend life.

 
 
 
 
 
 
 
If everything is OK, is this drug always available?

In some areas, states or territories it cannot be available due to local regulations.

Due to the cost of providing it the drug is very scarce, although we have been supplying this new treatment for PALS for some years.

Before we start a new patient, we must be sure that we will have sufficient supply of the drug to reliably provide treatment for the new patient for a long time. Existing PALS must have priority.
Accordingly we can only accept small numbers of patients.

If we could, we would supply anyone who would benefit.
   
There is also the fact that it can take up to 4 months to have each batch manufactured and we must have the funds to pay the Pharmaceutical drug manufacturer in advance. Their minimum production run order keeps our existing PALS friends supplied for over one year.
The way forward will be the involvement of a Pharma or VC.

Cost:
There is no cost.
We provide this ALS drug free of charge as a humanitarian imperative. 
You are not required to contribute anything.
We pay for it ourselves if we have the funds available.
 
Availability:
This is an Investigational New ALS Drug which does not have health Regulatory Authority marketing approval in any country.
 
The only legal way to get access to any drug is:
1/ If it has Regulatory Authority marketing approval.
 
2/ If it is in a clinical trial.
A clinical trial requires Regulatory Authotity permission and a large number of patients. It typically costs (the clinic charges and the drug) Euro17,000 ($19,000 US) to treat each patient in a trial. We cannot afford to do clinical trials.
 
3/ If the Authorities grant permission for compassionate use.
A doctor makes an application for permission to treat the patient on compassionate grounds. This is normally only granted in a case where the patient is very ill and not responding to existing drugs or where there is no effective drug for the disease in question.
There is no Regulatory Authority approved drug to cure ALS.
 
4/ In accordance with the `Right to try` rules

Most countries have some mechanism to allow a patient to use a experimental new drug. Rules differ and can be very complex and time consuming to deal with. We cannot help in advising about the local regulations in the country where you live.

It is for a doctor to decide to allow you to take RCH4.
You would need to discuss this with him or her. 
 
5/ If it is available - please refer to opposite column
 
I want to try this - what do I have to do?
You must meet certain criteria, i.e., you must have confirmed diagnosis of ALS and other specific clinical records. We, and a doctor, must believe that it may help your current condition and be certain that if we provide the drug that it will be used properly and not wasted. It is immensely expensive.

You must be willing to sign a confidentiality non-disclosure agreement (a guarantee not to give anyone technical information).
You would be required to firstly study all the information given to you and sign a "Patient Informed Consent for treatment" document.

You need to find out if your doctor is willing to try to obtain permission from the  drug Regulatory Authority in the country where you live  or give you written permission to take this drug. You may have difficulties in this aspect.
Countries differ in their rules, but most have a mechanism to
permit compassionate use or some other type of access to a new drug such as `The Right to try` rules in some places and 33 states of the USA.
 
Although we provide the drug free of charge, please be aware that we cannot pay your doctor for his or her services.
Due to, sadly, hate mail and shortage of funds to be able to treat more PALS, we have been obliged to remove the `Contact us` link.