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.

Saturday, March 18, 2017

Selective Urgency?

ALS advocates received an email and social media alerts this week:



Urgent, eh?

It was urgent when we discovered that the ALS Registry annual meeting last summer was being blacked out.

It was urgent in December when we asked when we asked for an ETA on a detailed report from that meeting and got an incredibly arrogant "when it's ready" governmental response.

It was urgent weeks ago when we asked the ALS Association, the ALS Registry's chief lobbying organization, for verification of the cumulative cost to-date of the project (and we got crickets).

It was urgent when the second annual report was not published on time and we were kept in the dark.

It has been urgent every year when we have asked how the new proposed appropriation would be spent.  Some details of a budget are urgent for any responsible steward asking for funds. We get none.

It is urgent that we be given the courtesy of information that we need in order to be informed, responsible advocates.

That's urgent.


Thursday, March 2, 2017

Solutions Don't Have To Be Complicated Or Expensive

Goal:  To encourage participation in ALS clinical research.

This morning there are 79 recruiting ALS trials at clinicaltrials.gov. About half of them are interventional.

Solution:

Pay an impecunious college student (preferably one with a parent with ALS) $15 per day to post a daily tweet and Facebook post featuring one of the trials.

That is not hard.  It takes effort and a reliable student and a budget of around $5000 per year.  It provides a precious very part-time work opportunity for a student in need of cash.

This will cycle information about every recruiting trial to those dealing with ALS every 2-3 months.

Simple.