ALS Advocacy

ALS Advocacy
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.

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.

Here's the link --

The deadline is March 25.

They have asked.  It would be a crime for us to fail to respond.

4 comments:

  1. Ignacio Serrano RincónMarch 15, 2013 at 9:18 AM

    The whole world is looking at you. It would be a crime to not speed up approval of on-going stem cells trials (Neuralstem, Brainstorm etc), as they have demonstrated to be safe and are the only hope for current PALS. If you do not act fast, you will not only be partners in that crime, but also USA will lose the opportunity to lead this technology.

    ReplyDelete
  2. No other disease is as cruel for patients and families - what does someone have to do to get the attention this disease deserves! Please think about visiting or even calling any ALS patient - (those who can still speak) or any that can still walk and spend a little bit of time with them - or any caregiver and find out how difficult their lives are - to be trapped in a body but still have your functioning mind - what could be more cruel?!?!? This is our lives each and every day!!! Heartbreaking isn't it - how about if it were your spouse, mother, child or sibling? Please spend a little time and take action to speed up the progress of finding a cure. You are in the drivers seat - please lead us to a cure or at least approve trials for out loved ones NOW!!!!

    ReplyDelete
  3. I sure will
    Family member,sibling

    ReplyDelete
  4. My husband has been battling A.L.S for 16 years. 14 of those years has been on a vent and feeding tube and unable to move. He has his mind and a strong fight and will to live, but with no real treatments or cure in sight it has been a a harder battle then anyone could ever imagine. My husband and all P.A.L.S deserve a real chance to fight and beat this monster. Just this week in our small community on Facebook we lost 5 people and my husband was admitted to I.C.U in very serious condition. The vent has kept him alive but he must now fight life threatening infections for the rest of is life, however long that may be.

    ReplyDelete