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I sent it


Thanks Zen
 
I am trying to learn as much as I can about advocating for this but am half scared they may call and ask me a question! ( They've done it before!when I am advocating for Medicare Part B therapy utilization caps)

So- set me straight if I am wrong-
A registry act for ALS would mean a NATIONAL database on a huge array of information and statistics about ALS -

which in turn would help scientists come closer to swifter diagnosis- possibly better prognosis and also arm them with valuable research for treatment and a CURE!?
 
Last Chance!

There may be a vote as early as today and if it fails we're done. We will have to start from scratch next year. We don't have the time to wait.

The ALS Registry Act will:
IN GENERAL- Not later than 1 year after the receipt of the report described in subsection (b)(2)(A), the Secretary, acting through the Director of the Centers for Disease Control and Prevention and in consultation with, shall--

`(A) develop a national voluntary health organization with experience serving the population of individuals withsystem to collect data on amyotrophic lateral sclerosis (referred to in this section as `ALS'), shall--`(A) develop a system to collect data on ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS, including information with respect to the incidence and prevalence of the disease in the United States; and

`(B) establish a national registry for the collection and storage of such data to includedevelop a population-based registry of cases in the United States of ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS.

If you haven't emailed your senators do so now. The letters are prewritten so all it takes is filling in your information and clicking Send. There is no more time to wait its now or never.
 
Scuttlebutt that I hear is that there is a very slim 11th hour possibility to get S.3297 moving before they recess.

If you've not emailed your Senators, please do today.

If you have emailed your Senators, please do again today. If you use the ALSA boilerplate website to submit your message, it's easy enough to modify the message to something short and sweet about the urgency of getting an ALS registry. You can also just go to your Senators' websites and use their contact forms. A simple message that we need for them to act on an ALS registry via S.3297 now is all it takes.

Please ask your friends and acquaintences to email their Senators, too. It's easy and it's effective. We put them in office, we pay them well, and they need to hear our voices.

Thanks, all. It's like there are 3 seconds left in the game, we're down by 5 points, and we don't have an all-pro qb to save us. We all need to pitch in to try to make something happen.
 
I actually received a positive reply from one of my senators in Missouri but she (Claire M) had already voted in favor of it but stated she would do so again if it came back on the floor for a vote.

Zaphoon
 
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