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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