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.

Saturday, June 18, 2016

___(Your Name Here)___, Tear Down This Wall!

It's a "now" moment for each of us.  Yes, you.  The stars are aligning and we must seize this moment.

We finally have some considerable focus on the huge protective wall between people with quickly fatal, untreatable diseases and experimental drugs.  We need to punch some holes in that wall.  Now.  Today.  We can do it. We must.

For a little over a year, a grassroots group of people fighting ALS became an informed activist group pressing the FDA, legislators, and drug developers.  They are smart.  They are full of energy.  They are fearless and nimble. Many of them are dying.  They experience the pain and understand the flaws of the status quo.  They are www.hopenowforals.org and they are on the FDA"s radar.

A few months ago we saw some considerable activity from another small group, www.myrighttotrynow.com . They proposed three pieces of legislation to punch some holes in the big wall between people dying of ALS and investigational drugs.  Their rally on Capitol Hill drew national attention on Thursday.  We stood in visible solidarity with advocates representing other terminal, unmet-need diseases.  Finally.

And last night, we saw a Vice feature, "Die Trying," on HBO that said it all, thanks to Angelina Fanous, a talented Vice writer/reporter with ALS.  Follow her @notsovanilla on twitter.  You will learn a lot.  And watch the Vice piece.  

The people with ALS whom we saw on Vice last night are still alive.  It's critical that we punch some holes now in the big protective wall that the FDA has around us all.  Sure, relatively healthy people need lots of protections.  Sure, people with existing treatment options need protection from things that may not be any better (or may be worse).  But people dying from ALS do not need to be protected to death.  We must act now.

When people with ALS have died, we seem to engage in some kind of societal hand-washing.  They're gone and are no longer suffering.  They are remembered as courageous and have impressive obituaries.  We move on and keep raising funds and talk of "promising" research.  That stinking treadmill must stop.  Now.

So please act, now.  It's as simple as sending some "Tear Down This Wall!" emails.  Watch "Die Trying" first, and you'll know what to say.  als.vice.com #viceonhbo

Please speak up to:
  1. Dr. Janet Woodcock at the FDA janet.woodcock@fda.hhs.gov .  I'm asking her to use paths such as Accelerated Approval more aggressively with terminal, untreatable diseases.  She gets it.  She just needs to feel the pressure that only we citizens can exert.
  2. Your two U.S. Senators and your Member of Congress, asking them to  co-sponsor any or all of Federal Right to Try legislation, the REGROW Act, and the RESULT Act.  You can read up on those at http://myrighttotrynow.com and they have tools for submitting your request.  These are pieces of legislation that will literally punch through some of those 1960's concrete barriers.
  3. President Obama at https://www.whitehouse.gov/contact telling him that it is urgent that the Executive Branch's FDA not build walls between dying people and experimental treatments but rather tear a few down.
This is our "now."  This is the moment.  Five emails.  Please act.  Thank you.





2 comments:

  1. Here's the debrief from Angelina Fanous @notsovanilla https://youtu.be/NSI_kEU1JAs Please watch and act.

    ReplyDelete
  2. Emails have been sent. Thank you for making it easy for us to help, delineating our key contacts at the end of the post. I've shared it with my peers.

    ReplyDelete