Tuesday, February 12, 2013

New Hope for ALS Patients - A Study with Gilenya

I think the scariest words a person could ever hear on this earth would be "You have ALS." I cannot begin to imagine the terror that must grip a person as their body stops responding to the brain's commands. To some extent, having multiple sclerosis, I have felt the fright of limbs that won't move or cannot feel.

Over the course of my disease I have had to use canes, a walker and even a wheelchair for brief periods of time. But, with a relapsing-remitting diagnosis, I have always had the luxury of making a nearly full recovery once the disease activity subsided between relapses.

Not so with ALS patients. Their disease marches on, unrelenting, unforgiving, robbing them of one thing after another. Taking away voluntary movement and confining the person to a prison within a body they can no longer control. The worst part is that there is no treatment to slow the slaughter of neurons.

I have always felt a strong compassion and sadness for those unfortunate enough to be diagnosed with ALS, feeling "there but for the grace of God go I." So when news of a possible treatment for the disease in Phase 2a clinical trials hit the wire this morning I could't wait to share it. The fact that it is my pride and joy, Gilenya, (TDI-132 aka: fingolimod, Gilenya™) that might make a difference in the lives of these patients leaves me smiling ear to ear.

http://www.prnewswire.com/news-releases/fda-approves-clinical-trial-of-tdi-132-gilenya-in-als-patients-190659561.html

It's my wish that amazing things are discovered and Gilenya can help lots of ALS patients live longer lives. More importantly, I wish them Quality of Life, because without that, living becomes just a prolonged wait for death.

Best of luck and Godspeed to all who enter the trial and to those who await the results.

A formal listing of the clinical trial can be found here:
http://www.als.net/ALS-Research/166/ClinicalTrials/

Information on why Gilenya might be helpful for ALS (pdf):
http://www.als.net/docs/uploads/Why_might_Gilenya_be_helpful_for_ALS.pdf

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