Jeanette Band

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

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,…[Read more]

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

Hi Dagmar,

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

Can you please provide instructions

Many thanks!

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-…[Read more]

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.

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.