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.

Thursday, May 24, 2018

Give Them A Moment At The Controls

The day a family member gets an ALS diagnosis, you become a passenger on a terrible, out-of-control, speeding, downhill train.  It is a nightmare ride and there is little you can do to change what is happening.  Somebody is in the locomotive doing ineffective things, and the whole family is stuck riding in a passenger car.

"Try" is a word that has a different meaning when you are stuck in coach.  It's not particularly the transitive verb that the rest of the world uses -- try escargot, try a Chevy, try a new tennis racket, try asparagus.  It's simply that you want to try.  You want to take a swing at life.  You want to take a nasty swipe at the disease that put you on this train.  You want a moment at the controls.

Regardless of where you are on the Right to Try opinion spectrum, we all owe it to every family dealing with ALS to give them a better journey.  Yesterday there was pandemonium with families trying to decipher what concrete options may have opened up to them.  They don't need more pandemonium.  They need help.

ALS advocates and advocacy organizations owe them that help.

This isn't a moment for "I told you so."  This isn't a moment to conveniently hide behind agnosticism.  This is a moment when families need organized information on all options (including candid policies from drug developers).  This is a moment when we can encourage people with ALS to openly share data about whatever paths they find and take.  This is a moment when we can fix the problems of trial and access processes that we didn't deal with for years.

People with ALS and their families deserve a fighting moment in that locomotive.

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