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.

Wednesday, September 5, 2012

Nero Fiddles


This is actual information from a living human being -- a beloved father, husband, son, brother, friend.  Over the years he has posted data religiously at www.patientslikeme.com so that others might learn from his experiences.

The FRS and FVC measure the path of his ALS.

In the treatments, you can see that he participated in a Phase 2 clinical trial - Neuraltus NP001.

Once his trial treatment was completed, the waiting began while biomarkers were measured and while other patients finished their trial treatments and while the data were evaluated.  The waiting continues.

Doesn't this bother anyone else enough to change the way we handle clinical trials and risk for people with ALS?  Do we not owe clinical trial subjects more than gratitude?

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