Old 02-15-2013, 01:56 PM #1 (permalink)
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Default Survey for FDA Meeting Feb 25th

A quick survey about clinical trials.

https://www.surveymonkey.com/s/YPZHK3M
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Old 02-15-2013, 03:18 PM #2 (permalink)
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Default Re: Survey for FDA Meeting Feb 25th

A nice article on the same subject

http://abcnews.go.com/blogs/health/2...m-drug-trials/
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Old 02-15-2013, 08:55 PM #3 (permalink)
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Default Re: Survey for FDA Meeting Feb 25th

They are also doing a webcast

http://www.fda.gov/Drugs/NewsEvents/ucm339833.htm
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Old 02-16-2013, 11:23 AM #4 (permalink)
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Default Re: Survey for FDA Meeting Feb 25th

thanks, did the survey!
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Old 02-16-2013, 12:19 PM #5 (permalink)
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Default Re: Survey for FDA Meeting Feb 25th

Also took survey..
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Old 02-17-2013, 05:28 PM #6 (permalink)
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Default Re: Survey for FDA Meeting Feb 25th

thanks for posting, survey done
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Old 02-19-2013, 05:16 PM #7 (permalink)
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Default Re: Survey for FDA Meeting Feb 25th

Could we please keep this going! I posted yesterday on another thread: FDA Hearing on ALS and now I see that that entire post/thread has disappeared. This is so very important that our voices are heard. I challenged everyone yesterday to complete the survey and will just be persistent enough to ask of you again, today.
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Old 02-19-2013, 09:22 PM #8 (permalink)
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Default Re: Survey for FDA Meeting Feb 25th

Quote:
Originally Posted by retiredmus2010 View Post
Could we please keep this going! I posted yesterday on another thread: FDA Hearing on ALS and now I see that that entire post/thread has disappeared. This is so very important that our voices are heard. I challenged everyone yesterday to complete the survey and will just be persistent enough to ask of you again, today.
I am hoping many PALS and/or CALS filled out the survey.
The only way the authorities (such as FDA), the Biopharm, the researchers and other people involved on fighting ALS can "listen to our voices" is by letting ourselves be heard.
I know forums are good for P2P assistance and making friends but, the only way a cure for ALS will be found is by making ourselves be heard.

NH
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Old 02-25-2013, 01:23 AM #9 (permalink)
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Default Re: Survey for FDA Meeting Feb 25th

I have tried to talk many times, but get the feeling they are not interested in finding a solution/cure/cause. Seems it's all about making money.. We have one "approved" treatment, that even if they had any conclusive proof of the claims they make I would not take it.. The risks outweigh the benefits. .. May I add all my drugs are free.. Sorry but I don't take any drug until I have researched all information and concluded it is worth my time.. My diag. was 2007 and I still get around (short distances) unaided and even drive around the neighborhood a couple of times a week. Only Meds. I take are Heart Meds. as I also had heart attack in 05. I'm sure SysOp will delete this message but.. My advice? Don't panic/worry (there's nothing anyone can do at the time anyway) and Eat well (don't avoid fatty foods as fat helps support/maintain muscle tissue) Be happy and live for the day...
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Old 03-02-2013, 07:02 AM #10 (permalink)
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Default Re: Survey for FDA Meeting Feb 25th

Please be a squeaky wheel today!

ALS Advocacy: You Know What They Say About Squeaky Wheels
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