tomby
Distinguished member
- Joined
- Feb 2, 2010
- Messages
- 377
- Reason
- PALS
- Diagnosis
- 09/2009
- Country
- US
- State
- NY
- City
- Syracuse
new press release
Press Releases - Cytokinetics
Press Releases - Cytokinetics
cytokinetics
- Thread starter tomby
- Start date
- Status
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 haven't been on here in a long time. My brother was diagnosed with als in oct.2011'you are all warriors.it's amazing what you go through daily,and there's nothing tha t can slow down this cruel disease. It knocks the strength out of you.i've never seen anything like this. No on understands what this disease entails unless they have it or a family member has it. I watch my bother stuggle with his voice,and it's heart breaking. I pray that something comes out soon. I read about cytokenetics being on the fast track?what does that mean exactly?does it mean it will be available to purchase in2011 or in 10 years from now?the pace the way everything is done with this disease is too slow.i hope something comes out soon.we're close but yet so far away from geeting a drug available for everyone. This is so fustrating.
Penney211
i haven't been on here in a long time. My brother was diagnosed with als in oct.2011'you are all warriors.it's amazing what you go through daily,and there's nothing tha t can slow down this cruel disease. It knocks the strength out of you.i've never seen anything like this. No on understands what this disease entails unless they have it or a family member has it. I watch my bother stuggle with his voice,and it's heart breaking. I pray that something comes out soon. I read about cytokenetics being on the fast track?what does that mean exactly?does it mean it will be available to purchase in2011 or in 10 years from now?the pace the way everything is done with this disease is too slow.i hope something comes out soon.we're close but yet so far away from geeting a drug available for everyone. This is so fustrating.
Penney211
pearshoot
Senior member
- Joined
- Feb 6, 2011
- Messages
- 636
- Reason
- PALS
- Diagnosis
- 02/2010
- Country
- US
- State
- mo
- City
- nixa
participated in part a of the test, same side effects but definate positve results. start of test grip strength right hand 43lbs, left hand 19lbs. end of test right hand 51lbs, left hand 19lbs, definately not placebo effect. definately not sustaining, tested oct/nov and short time later could feel reduced strength both hands als clinic may 7th had them measure grip strength again (something they normally do'nt do) right hand 33lbs, left hand 5-10lbs. asked if they had some black market drug. no luck i am definately ready to take this on a regular baises.
Luke
Distinguished member
- Joined
- Apr 3, 2012
- Messages
- 317
- Country
- US
- State
- Unspecified
- City
- Unspecified
Hi Penny,
The FDA's website has a very good explanation of what it means when a drug receives fast track designation.
Fast Track, Accelerated Approval and Priority Review
The FDA's website has a very good explanation of what it means when a drug receives fast track designation.
Fast Track, Accelerated Approval and Priority Review
pearshoot
Senior member
- Joined
- Feb 6, 2011
- Messages
- 636
- Reason
- PALS
- Diagnosis
- 02/2010
- Country
- US
- State
- mo
- City
- nixa
no bulbar sypthoms, still walk, talk, eat, drive on my own. blessed with slow progression in second trug trial, Rasagline, started in january, can't tell any change in progression speed, trial last until next january, look for update after that
- Status
