Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.
Friday, March 15, 2013
We Have Ten Days
The FDA has asked the public for comments related to drug development and ALS. So far very few have taken them up on their offer to listen.
We need everyone who has ever lost a loved one to ALS to speak up.
We need everyone who has ever donated a dollar to an ALS charity to speak up.
We need everyone who has ever been employed in the battle against ALS to speak up.
We need everyone who has ever volunteered for an ALS organization to speak up.
Around 60 people gave their six-minute comments in person to the FDA on February 25. Only 393 more have submitted comments to the FDA online as of today. That is just not enough. The FDA is bombarded with requests every day. We need to make sure they know that ALS needs to move to their front burner.
Don't know what to say? It doesn't have to be technical or fancy or long. Ask the FDA to listen directly to patients and caregivers. Ask the FDA to be willing to let people with ALS take some risks. Ask the FDA to help come up with some clever ways to move their approval process faster for ALS therapy candidates. Ask the FDA to let us know what they need to do a better job for ALS. Simply remind the FDA that the status quo is not acceptable. Let them know that they're protecting people with ALS to death.
Please speak up. Nobody speaks on your behalf as well as you do yourself.