[Jeanette Band]

Mum continues to remain stable with RCH4, no change in her ALSFR score.

[Jeanette Band]

Jean-Pierre you said some interesting things about the FDA. I have taken the trouble to examine their site.

You wrote-A Orphan Drug Designation only means someone has asked FDA to examine the commercial preparedness of a drug.

It has nothing whatever to do with commercial readiness.

Anybody can ask this to the FDA (try it)

True. Yes, try it yourself Jean-Pierre.
But you at least must have a chemical formula or drug composition, scientific laboratory evidence that it works and an explanation why it does.

RCH4 must not only have had laboratory evidence but more importantly, they have years of evidence of safety and efficacy in slowing the progression.
Check it out yourself on the `net
https://rch4.org/rch4-clinical-data

It was indeed examined, but it was rejected. It is written in the link you posted.

No disrespect but you are wrong. Where does the FDA say it was rejected? They do not.
https://www.accessdata.fda.gov/scripts/opdlisting/oopd/listResult.cfm

Now, there is a lot of misunderstanding here.

Yes, that is true. Unfortunately you do not understand a lot of things. Again no disrespect intended.
You confuse orphan designation and marketing approval. Application for marketing approval is public information. I can find no record of the charity ever having applied for marketing approval.

The FDA will not give an authorization market to a drug simply because someone has filled in a form on Internet.

Correct. Clinical trials are needed.

To have some odd of success, an organization needs to prove to the FDA it can spend $20M on clinical trials

Untrue. Where do they say $20 million must be proved?

and that they have at least several dozen MD/PhDs in their staff to back up their claims.

At least several dozen PhDs? Again, where do they say that?

There are many ongoing scientific work on ALS dgs and that have public information about them

How many of them have slowed the decline in function? Not one.
Out of the last 80 trials of ALS drugs how many slowed the ALSFRS progression in the PALS population tested? Not one.

RCH4 has slowed my mothers decline for more than 3 years without side effects. See her chart above as at last January.
Months now of RCH4 treatment 40
Monthly decline from onset to start of RCH4 -1.29 ALS points
Monthly decline since start of RCH4 -0.075 ALS points
Therefore decline rate slowed by 94%

I have no connection with the RCH4 charity but mystified about the reason for all the damaging negativity towards them by people who know everything.
The charity provides support, the only drug that really works and never ask for money.
I mean no disrespect to anyone or their opinions but things are said which are uninformed, unfair and unacceptable thus damaging the interests of other patients.
You may believe that RCH4 is useless despite clear evidence to the contrary, but please do not deprive others from the chance of extending their life. .

[Jeanette Band]

Hi ,
Please see attached mum’s latest ALSFRS chart. She continues to remain stable on RCH4.

[Jeanette Band]

Hi Dagmar,

I’m having an issue with being able to add mum’s AlSFRS chart.

Can you please provide instructions

Many thanks!

[Jeanette Band]

We were given the devastating news that mum had MND 3 years ago today 17/11/17. It is one of those moments that is etched in our family’s memories.

We consider ourselves very fortunate however to have found RCH4 and the charity that provides it. Their ongoing care and support is invaluable, Mum remains stable with no real change in her ALSFRS- score. We are so grateful to she is still here with us.

[Jeanette Band]

Mum continues to do well on RCH4 , her ALSFRS-R score remains unchanged this month.  We are very grateful to the Charity group and hope more Pals have access to RCH4.

[Jeanette Band]

It has now been 2.5 years since mum commenced using RCH4 , all provided free of charge by The Charity.  Her ALSFRS scores have not declined in this time and she continues to remain stable. Much gratitude and thanks to the charity for their ongoing compassion and support.

Her latest chart.