The man who beat Lou Gehrig's disease Marc A. Thiessen: The man who beat Lou Gehrig's disease
In recent days, we have stopped to remember those who left us in 2016 whose lives profoundly changed the world around them - people such as
Allow me to add a name to that distinguished list that you probably never heard before:
Amyotrophic lateral sclerosis, or
No one, that is, except Ted.
When Ted was diagnosed in 2010 by
But two years later, on
What saved Ted was an experimental ALS treatment pioneered by doctors at the Emory ALS Center, in which doctors opened his spinal cord and injected neural stem cells directly into diseased areas, where the pools of motor neurons affected by ALS are found. The hope was that the surgically implanted cells would fix or replace the damaged ones and that this would slow or stop the degeneration of the motor neurons.
Before surgery, Ted was told the treatment would not help him. He was part of a Phase I safety trial, whose sole purpose was to prove the procedure would not kill him. But to his doctors' surprise, not only did the procedure not kill him, it also reversed his ALS symptoms.
The results were so shocking, so unprecedented, that Glass actually went back to reconfirm that Ted even had ALS. He did. Ted recalled for me the moment when Glass sat him down and said: "You're the first ALS patient I ever told this to, but right now you are not dying from ALS; you are living with it."
And live he did. He used the time he had been given to the fullest - not only to enjoy his beautiful wife, Michelle, and their children, but also to fight for others facing terminal illnesses. Ted became a champion of the Right to Try movement - a campaign led by the
I got to know Ted while working with Goldwater president
Millions of Americans are dying of terminal illnesses, while treatments for many of those illnesses exist and are being safely used in clinical trials. But most patients cannot get them because the
In 2014, Ted wrote an op-ed for the
But Ted's victory came in the shadow of tragic news. A few months before the bill was signed, he was diagnosed with brain cancer. This time there would be no miracle cure. He passed away on
We will never know how long Ted's ALS symptoms would have remained in remission, but we know this much for certain: Ted did not die from ALS.
"I don't know why I was picked or why I was chosen," he once told me, "but if I've been given this gift, how selfish would it be - to keep that gift to myself and not do something good with it?"