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, December 17, 2011

Here Are Some Realistic Goals

Occasionally ALSadvocacy is chided by some people who work for ALS organizations. Some ideas such as inter-organizational coordination, awareness programs with global punch, a case study of the cost of the disease, educational programs at many levels, normalized reporting on annual investments in research, or a new standard for measuring a disease's impact are perceived as not being realistic.

Perhaps we can agree on a few goals for 2012 that are completely "realistic" from any perspective. Here are two.

Insure that every newly diagnosed ALS patient in the United States
1. Is immediately advised of the importance of self-enrolling in the CDC's national ALS Registry.
2. Is immediately advised of all clinical trial options available.

Those are simple. They are deliverable. They are measurable. They are important. They are not happening today. If they're not "realistic" then perhaps our organizations should find an easier disease to fight.

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