Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, February 6, 2013

It's Wonderful To Live In A Country Where The Public Is Asked To Speak Up

On Monday, February 25, the FDA will hold a Part 15 Hearing dedicated to ALS.

Here's the scoop --

You may attend and make comments; however, you must submit your request to speak before the end of the day on Friday, February 8!

The more people who give the FDA their thoughts on drug development and regulation, the more likely we are to have some creative solutions.  The status quo has failed.   The more patients and caregivers who speak, the more likely they are to have influence over changing the status quo.

Please speak up, in person at the FDA in Silver Spring, MD, on February 25 if you are able.  And if you have ALS, even though they have not yet made accommodations for remote participation, the FDA needs to know that remote participation is a reasonable accommodation to let you speak up.

Finally, there is an open written comments period for the month after the hearing for all to chime in.

Please, we need to speak up.  Thanks, all.

1 comment:

  1. An advocate built a nice facebook page for people to share information and ideas regarding the Hearing!/AlsSpecificFdaHearingFeb25th