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.

Sunday, June 12, 2016

But You Were Just Here

May 10, 2016, was ALS Advocacy Day on Capitol Hill.  Hundreds of us asked for legislation, including faster paths for investigational drugs to reach people dying from ALS.  May 10.  Just five weeks ago.

"But you were just here.  These things take time."
"Nothing can be accomplished before the election."
"It's politics."
"Legislation can take years."
"You don't understand the system."
"Recesses are coming up. Not much will happen."

Sorry.  We're not accepting any bureaucratic excuses.  We can do this. We must.  Here's why.

On Thursday, June 16, 2016, hundreds of us are showing up on Capitol Hill again.  So soon?  Yes.  You see, there were 600 Americans alive with ALS who saw what happened on May 10 who have since died.  600 families who heard about all the hoopla on May 10 have since buried their loved ones.  600 American lives in just a few weeks.  600 lives.  So many.  So soon.  So fast.

We need for legislators to do their jobs.  Now.  ALS moves quickly.  We need to step it up a notch to address the needs of every American family dealing with ALS.  Now.  We can. We must.

Please speak up.  Please contact legislators and let them know that these 600 lives matter as do the next 600.  This fast, continuous carnage is outrageous.  The FDA processes that work well to keep us healthy people safe literally protect dying people to death.  There are three pieces of legislation for your consideration and action at .

600 lives in just the few days since May 10.  600 funerals.  600 families grieving a mother, father, son, daughter, loved one.  Just since May 10. #600lives

It's urgent. We will not accept any bureaucratic excuses.  Period.


  1. Thank you for posting this! How/where did you get the figure of 600? Is it a projection based on the known mortality rates of ALS?

  2. Thanks. We usually loosely talk about around 6000 US deaths annually from ALS. Death certs are coded at the G12.2 MND level, so we can't get an exact number for the ALS subset. The CDC Wonder database shows MND as an underlying cause on 7271 death certs in 2014. My 600 number may be conservative for 5 weeks (approximately a tenth of a year).