Sequoia
Senior member
- Joined
- Sep 19, 2010
- Messages
- 841
- Reason
- PALS
- Diagnosis
- 08/2010
- Country
- US
- State
- Washington
- City
- Seattle
Our leadership team has 2 openings. Two original members have had disease progression to the point where they have a very difficult time attending our weekly telephone conferences and overseeing the work of our organization. If anyone would like the opportunity to serve on our board please send us a note.
As many of you know we are the only group that is actively pursuing FDA Support, Pharma support, and neurologist support for both EAPs and accelerated approval of treatments in the pipeline.
We are not affiliated with the ALSA, they do Patient support and fund raising for research that may lead to a cure someday.
Our goal is to keep everyone alive until that glorious day arrives for a cure! We have learned from and implemented many of the smart things that the HIV supporters and cancer activists did to acquire life preserving treatments
As many of you know we are the only group that is actively pursuing FDA Support, Pharma support, and neurologist support for both EAPs and accelerated approval of treatments in the pipeline.
We are not affiliated with the ALSA, they do Patient support and fund raising for research that may lead to a cure someday.
Our goal is to keep everyone alive until that glorious day arrives for a cure! We have learned from and implemented many of the smart things that the HIV supporters and cancer activists did to acquire life preserving treatments