Genervon - GM6 - An opportunity to communicate with the FDA

[jennyinfrance]

Hi, I have been reading your posts on GM604. I have been campaigning with other PALS for Accelerated approval for the drug GM604. Genervon are meeting the FDA this month. There is lots of info on this facebook page https://www.facebook.com/gm604forals and a petition to the FDA (Please sign and pass on) http://tiny.cc/60rdsx. I have ALS and we need this drug now!

 

[jennyinfrance]

Thank Nikki - there are already almost 80,000 signatures on Change.org for that drug. I was wondering about clinical evidence on that drug, thanks for the info.

Hi I have an update@ over 140,000 signatures from the ALS community and rising for Accelerated approval of GM604. We need people to keep signing the petition. We can make a difference! https://www.change.org/p/janet-wood...d-approval-of-genervon-s-gm604-for-use-in-als Sign now and pass it on!

 

[GregK]

Hey there jennyinfrance.
It is a bit suspicious that your first and only posts here are for gm604.

Many of us tend to be suspicious so why don't you post a we'd bit of Bio over in the Welcome New Members - Say Hello thread?

 

[jennyinfrance]

Following has information regarding GM6 and a communication from Genervon about how ALS advocates can contact the FDA:

ALS Advocacy: "The FDA Will Listen To Your Voice If You Choose To Express It"

Motor neurone disease patients push US to fast-track promising new drug Motor neurone disease patients push US to fast-track promising new drug | Society | The Guardian

 

[GregK]

Ok, I propose that good ol Jennyinfrance is a bot.

 

[summerguy2007]

It makes no sense for them to lie. They would be caught in the lies and destroy Genervon and their individual carriers. Many of them are Ph D scientists and MD's. Of course they have a strong desire to get it approved. The treatment was used on a total of 68 people with no adverse effects (includes all three diseases). I've been living with fully developed ALS/MND for 8 years, but had short events before that, so I believe I've had it most of my life. I'm ready for GM604 therapy ASAP.

 

[Graybeard]

I'm tempted to drive the 50 miles to their HQ and stage a sit-in.

 

[Janie H]

OMG 196,000 signatures!

Janie

 

[jennyinfrance]

What is the link to CDER that is supposed to be the best source to send the petition to ? Other than that anyone know the official FDA website?

Hi, this is the link to the petition. https://www.change.org/p/janet-wood...d-approval-of-genervon-s-gm604-for-use-in-als We are trying to spread the word globally. Please spread the word! I have had trouble finding my way round this forum but I have been doing my bit on twitter - @jennyinfrance

 

[rknt50a]

Genervon

 

[plittman]

Why are we ALS patients petitioning for immediate access to GM604 and the ALS neurologist are saying nothing?

 

[affected]

Ok, I propose that good ol Jennyinfrance is a bot.

seems so

 

[affected]

welcome plittman, can I suggest you post an introduction in a new thread so we can get to know who you are?

 

[plittman]

tuarI do not know how to start a thread. I am a 73 year on physician (retired Radiation Oncologist) diagnosed in 2013 and barely able to walk at this point. I can still speak but speech is deteriorating. My arms and hands are getting very weak but still able to feed myself. I use a bipap all night but do not need it during the day. My disease seems to have progressed fairly rapidly during the last 6 months. I could not tolerate Rilutek because of nausea. My wife is my care giver at this time. We live in a single home in Stuart, Florida which is about 2 hour north of Miami.

 

[rknt50a]

Genervon statement re FDA meeting...

Genervon