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, April 26, 2017

ColLABorate, Please, Now!

A young father with ALS is in this clinical trial, on the drug protocol for more than 60 days --
https://clinicaltrials.gov/ct2/show/NCT02437110

He actually has experienced clinically measurable improvements.  That's huge.  Normally an ALS trial success consists of getting worse less quickly than before.  Here, we're talking improvements.

I asked him if he knew if anyone else on the drug was having similar results.  Unfortunately he was the only one he knew of on the drug protocol.  NIH had a very small sample set and found very few HERV K positive people with ALS.

Isn't this the promise of precision medicine?  To test the right therapy on the right patients?  Why aren't we finding the right patients for this clinical trial with some urgency?

There are numerous, separate precision medicine projects in the ALS space.  There are even more repositories of tissue of people with ALS.  Cmon, folks, let's screen for HERV K and find some candidates and get this trial filled and completed quickly. Now!

It's not that hard if you really mean it when you say you collaborate.


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