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.

Thursday, January 23, 2014

Could We Just Put A Mother In Charge Of Clinical Trials, Please?

At the beginning of every summer vacation, we kids liked to get new stuff for our summer play needs.  A nice fresh baseball, a basketball, ...

If I asked for a new baseball and my brother had already been granted the request and bought one, do you think I got one, too?  Of course not.  We could share.

If he asked for a new basketball and I already had bought one, do you think he got one for himself?  Of course not.  We could share.

Sure, we had our own gloves and bicycles, but some things just made sense to share.

Today on a webinar, I heard of the promise of MRIs in possibly diagnosing ALS.  It's very preliminary.  I searched clinicaltrials.gov for "amyotrophic and MRI."  There were a few recruiting trials involving MRIs, but all were different in what they were doing or why they were using MRIs.

And I thought wouldn't it be smart of all of those MRIs were available for the other researchers to see.

And then had another thought. Wouldn't it be smart if the thousands of people with ALS who have MRIs in their medical records could simply say, "Share this with researchers." 

Today it seems that we buy a lot of baseballs and basketballs that stay in individuals' closets.  They need to be shared.

We need a mother.

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