Sequoia
Senior member
- Joined
- Sep 19, 2010
- Messages
- 841
- Reason
- PALS
- Diagnosis
- 08/2010
- Country
- US
- State
- Washington
- City
- Seattle
Hello pals and cals...were you turned down for one of drug trial because you couldn't pass the breathing test, or were diagnosed for too long? Try this, what have you got to loose?
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. (we do not know the costs yet)
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]
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.
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. (we do not know the costs yet)
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]
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.
