Early access for Dexpramipexole, and/or CK-2017357

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edjnc		Posted: Tuesday, January 03, 2012 11:33:12 AM
Rank: Advanced Member Groups: Member Joined: 10/29/2011 Posts: 66 Location: United States		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: treat.us.now@google.com 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.
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RL Schafferr		Posted: Tuesday, January 03, 2012 11:37:22 AM
Rank: Advanced Member Groups: Member Joined: 6/14/2009 Posts: 5,621 Location: Inman ,S.C. USA		If it isn't approved by the FDA, insurance won't cover it. And we don't know the efficacy of either drug. That's like buying a pig in a poke. Who knows if it works?
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Lolo		Posted: Tuesday, January 03, 2012 1:15:33 PM
Rank: Advanced Member Groups: Member Joined: 11/3/2008 Posts: 347		I'm thoroughly confused. The first 20 people to reply get early access to these drugs? How? Why is it limited to just 20?
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edjnc		Posted: Tuesday, January 03, 2012 4:19:22 PM
Rank: Advanced Member Groups: Member Joined: 10/29/2011 Posts: 66 Location: United States		Lolo wrote: I'm thoroughly confused. The first 20 people to reply get early access to these drugs? How? Why is it limited to just 20? Sorry for the confusion. The intent is to have about 20 people join together to work with us in an attempt to persuade these two Drug companies to consider early access. Obviously many of us would like early access and we hope the initial Pilot-1 will be the beginning of help for everyone. The limit on size is because the few of us who are actively working on this can only handle the communication and coordination of a modest sized effort.
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edjnc		Posted: Sunday, January 08, 2012 10:42:08 AM
Rank: Advanced Member Groups: Member Joined: 10/29/2011 Posts: 66 Location: United States		We now have about 20 folks interested in Pilot-1. So, that is about the max we can handle. To keep up to date please click here, it is a work in progress: https://sites.google.com/site/alstreatusnow/home/pilot-1
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edjnc		Posted: Saturday, February 04, 2012 3:53:58 PM
Rank: Advanced Member Groups: Member Joined: 10/29/2011 Posts: 66 Location: United States		Please consider: Purchase a few shares of Cyto stock to add to your clout when requesting early access. It is only $1.08/share. I bought a few weeks ago at $1.00, now up to $1.08. Who wants to join Wanda and I in applying for Compassionate Access? And who is willing to join our Treat-Us-Now! campaign? Dr Brooks says we need 10,000 signatures, we are now over 3,600. Ed Ed
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alexkst97		Posted: Monday, April 02, 2012 5:09:27 PM
Rank: Newbie Groups: Member Joined: 3/9/2012 Posts: 2 Location: Mexico		edjnc wrote: 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: treat.us.now@google.com 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.
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alexkst97		Posted: Monday, April 02, 2012 6:05:39 PM
Rank: Newbie Groups: Member Joined: 3/9/2012 Posts: 2 Location: Mexico		Ed: I'm really interested in the Pilot 2, when you'll have it? my wife was diagnosed with ALS since July 2011, but it advance too fast and we are very hopeful with Dexpramipexole and it's early access as our last resource. Alex
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edjnc		Posted: Monday, April 02, 2012 7:50:17 PM
Rank: Advanced Member Groups: Member Joined: 10/29/2011 Posts: 66 Location: United States		Alex: Here is the latest. We now have over 11,000 signatures on a Petition which we hope to use to convince the 3 Pharmaceutical companies showing excellent results in Phase II trial to help us do what the HIV community has done...have those 3 treatments available now. With over 30 treatments now undergoing FDA trial there is great hope for every ALS patient. We are a new non profit: ALS Treat Us Now! dedicated to prolonging and saving every ALS patient. Our website: http://treatalsnow.org/Home_Page.html Who We Are: https://acrobat.com/app.html#d=Evq8wqopIx557zUQl-H9rA Our email: treat.us.now@gmail.com, Our Petition: http://www.change.org/petitions/corporate-citizens-authorize-and-make-available-compassionate-use-drugs-for-als-patients-now Facebook page: http://www.facebook.com/pages/ALS-Treat-Us-Now/220968231317148?sk=info Best to you.
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