Accelerate Drug availability....join us

[edjohnson]

Much to look forward to in the way of new treatments in 2012. Help speed the process of making them available. Please sign our petition.... and volunteer to help our 7 person Steering Committee.....many easy ways to help..an hour /week is all it takes.

 

[edjohnson]

Re: Accelerate Drug availability....join us..Pilot-1

Just in case NP001 is not made available to PALS under early access, we (The ALS Treat Us Now Steering committee) is initiating a Pilot 1 initiative to allow early access to Dexpramipexole and/or Cytokinetics CK-2017357.

We invite 10-20 PALS who want Early access to these two drugs to join in this Pilot-1 initiative.

Our goal will be to have early access granted by March 31 2012.

If you are interested in participating and helping, please send us an email with your response to these 4 questions, ...or post your response on this thread.


1-You are willing to spend 1 hour per week, most if not all the time will be on your computer, IPad etc.

2- You are willing to send us your email address and are willing to join a Google group set up to facilitate our communication with other Pilot-1 volunteers.

3- You understand that Early Access probably means you will have to buy the treatment from the Drug company. There is no free lunch. You are NOT committing to purchase, only saying you understand there will most likely be a cost to PALS.

4- You have a working relationship with a Neurologist.

Please post your response and comments/questions on this thread or send your response, or questions to: [email protected]

Sincerely, Ed for the ALS Treat us Now Steering committee (We are Barbara, Diane, Ed, Larry, Laura, Sharon, Ted).

After 1 week from today we will assume all interested have replied....We will cap at 20 for each treatment,....we intend to have a Pilot 2 if necessary.

And a huge thank you to Persevering for the NP001 update.

 

[fillemvs]

Re: Accelerate Drug availability....join us..Pilot-1

Hi. I'm interested in joining the pilot-1 program.

Thanks

1-You are willing to spend 1 hour per week, most if not all the time will be on your computer, IPad etc.
yes
2- You are willing to send us your email address and are willing to join a Google group set up to facilitate our communication with other Pilot-1 volunteers.
yes
3- You understand that Early Access probably means you will have to buy the treatment from the Drug company. There is no free lunch. You are NOT committing to purchase, only saying you understand there will most likely be a cost to PALS.
yes
4- You have a working relationship with a Neurologist.
yes
- Will Zheng

 

[edjohnson]

**email removed**

 

[twinmommie72]

Im all in...I cant access the address you posted.

 

[Sequoia]

Twin Mommie, you are on the list. ((hugs))

 

[Sequoia]

Everybody, we have almost reached the 20 for the Pilot 1...If you want to be on the Pilot 2.... PM me with your real name and your email address and I will put you on the list. This is great pals and cals....we are on the move!

 

[Ms. Pie]

Thank you! I sent the e-mail.

 

[patricia1]

Is there anyone on np001 that is improving in anyway

thanks pat

 

[Shane the Pain]

Hooray Hooray !

Lets go people...lets get this thing rockin' !

Sign up, get involved, this one deserves your attention
and immediate support...now do it now ! please...

Feels good to have some positive energy going our way.

Fight On,
Shane the Pain

 

[Sequoia]

GUESS WHAT? We do not have 20 folks in the Pilot 1 group....some opted out...so if you are interested PLEASE get hold of us. The email address is 6 posts above. Or if you have problems just PM me.


I HAVE A DREAM: that one day these drugs will be available for everyone who suffers from ALS, so that we can live longer to see a CURE !

MAKE MY DREAM COME TRUE: get involved!

 

[mountainsnow]

My father would like to join the Pilot 1 initiative, if it is not too late. We will send an email to the group now.

Thank you for your hard work.