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.

Tuesday, March 24, 2015

A Message From A Consummate Expert In ALS

The following words of Eric Valor were read at the #FDAHope4ALS  Rally in Upper Senate Park in Washington, DC, on March 25, 2014:

Eric N. Valor, diagnosed 2005, quadriplegic and on mechanical ventilation 2008.

ALS has taken everything away from me. I would say "let that sink in" but there is no way that any of you can fully grasp what that means. I didn't either until it happened. At age 35 I was on top of the world. I was very happily married, living in a house on the shore of the Pacific, successful in my chosen career, very fit and healthy, and essentially bullet-proof. But then I was visited by random misfortune from which there is no evasion or escape. Within a few short months I was diagnosed with Amyotrophic Lateral Sclerosis. Once diagnosed there was nothing any doctor could do except chart my decline and offer relief from symptoms. There is no treatment of any kind. It's a death sentence.

Everything drifted away with the inevitability and force of a swiftly-receding tide. One by one I had to give up all those things which defined me. Then my ability to breathe was taken, and thus the last of my independence faded away. Eventually even my most treasured achievement, my marriage, was shattered under the strain.

I am now totally paralyzed (quadriplegic) and dependent on a machine for my very breath. Everything I had built, bought, saved, or enjoyed in my life was taken from me or consumed by this disease. It can happen to you and it can happen today. And without any treatment options your story will follow mine.



Right now, if you were diagnosed later today and The Cure for ALS started the usual process of clinical trials, you would not survive to see that treatment available to you. If you were lucky, you could be one of the few hundred out of over 30,000 patients to use it briefly in trial (then your access would be removed). But we have a way to give hope, and that is the near-term access to experimental treatments like GM604.

In 1992, in response to the HIV epidemic, FDA created the Accelerated Approval Program. This allowed patients facing swift death from a disease for which no treatment options existed to access drugs outside of clinical trials, provided they have passed preliminary safety and efficacy trials. Two years ago, FDA agreed with ALS patients that we should have a faster pathway to treatment options.

We believe Accelerated Approval is that pathway. GM604 has proven itself safe in a variety of trials, and the data in ALS patients suggests efficacy in a much stronger way than any previous ALS treatment ever. We, the patients living today, want access to something which can potentially save our lives today. Tomorrow is too late.

ALS can strike anyone at any time. We never thought it would touch us. But now we are literally in the fight of our lives. This is our stand. As Lou Gehrig once said, we have an awful lot to live for. We need your help.


Thank you.

1 comment:

  1. Eric, It was great to have everyone out there sharing in a common goal this afternoon. I know we joked that Obama only has a pen and a phone, but we would like to hear from the White House during all the silence from the FDA. Please help gather 100,000 signatures in 30 days! White House Petition http://wh.gov/iWMcT

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