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.

Tuesday, March 10, 2009

Can We Start Counting All The Noses Yet?

The ALS Registry Act Got A Few Teeth Tonight

It appears that the $410 billion spending omnibus act passed by the Senate tonight included $5 million for the ALS Registry and $2.5 million to fund the respite care act that was never funded.

Let's start counting noses and keeping track of their medical histories... and let's give some caregivers a chance to come up for air.

Finally!

Editorial comment:
Perhaps an effective and dynamic registry for people with ALS would have made the whole Iplex dilemma a lot easier to solve. It is incredible that we have never started gathering medical and environmental data and outcomes for every case of ALS in our country, yet with a swipe of my Costco card , a cashier can look up how many pineapples we consumed last year.

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