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edjohnson

Active member
Joined
Nov 18, 2011
Messages
49
Reason
PALS
Diagnosis
10/2011
Country
US
State
nc
City
emerald isle
Sequoia suggested and she is correct...see her suggestion and the 1500+ post she is referencing here below:
Ed

Ed this is great news 1500+ I just hope that everyone on this Forum will sign the petition. I sent a Christmas letter to all my contacts asking them to sign. But I see that not many folks are on this thread....perhaps you should change the thread title to ALS-Treat us Now!


Merry Christmas and Happy Holidays to all. Ted and I know 2012 will be the year we reach a tipping point...from ...there is no cure,... to many trials already showing Treatments that work...join us by signing our petition and volunteering to help, or recruiting someone to help.
Ted, Diane, and I and several other activist Treat Us Now folks....1500+ and counting.

Our Mission:
Mission statement:
As ALS patients and their caregivers, we are committed to acceelerated
access to treatments that will slow progression or provide a cure.

Goals:
1. To assure compassionate access for ALS patients to treatments that
have demonstrated in Phase II trials the ability to slow progression
or cure ALS.
2. To cooperate with all willing ALS stakeholders.
3. To assure that funds are made available to allow patients
compassionate access to treatments..
 
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penney21

Member
Joined
Jan 13, 2012
Messages
13
Reason
Loved one DX
Diagnosis
10/2012
Country
US
State
rhode island
City
providence
hi everyone,

I'm a sister of a brother who may have als. first it was definite. now if it doesn't go beyond the focal area for a significant amount then it could be pbp or bp.i'm griving over this ALS diagnosis. i have been since october.has anyone ever had a ALS diagnosis like this?

Also there is not going to be another phase 3 dex trial in the spring, the company wants to wait till this phase 3 trial is complete. this wiil take us tiil the fall. this is so depressing. i'm sure many of you were counting on this as my brother was,too.this disease is so horrible,you try to have hope and everything is so difficult.even the health staffs do not return phone calls .
 
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