Survey for FDA Meeting Feb 25th

[sadiemae]

A quick survey about clinical trials.

https://www.surveymonkey.com/s/YPZHK3M

 

[sadiemae]

A nice article on the same subject

http://abcnews.go.com/blogs/health/...lou-gehrigs-disease-blocked-from-drug-trials/

 

[sadiemae]

They are also doing a webcast

http://www.fda.gov/Drugs/NewsEvents/ucm339833.htm

 

[HelenL]

thanks, did the survey!

 

[Polar]

Also took survey..

 

[Bhappy]

thanks for posting, survey done

 

[retiredmus2010]

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.

 

[Nighthawk]

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

 

[Polar]

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.. :sad: 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...

 

[rknt50a]

Please be a squeaky wheel today!

ALS Advocacy: You Know What They Say About Squeaky Wheels