US CDC ALS Registry Annual Meeting?

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rknt50a

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Lost a loved one
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Has anyone here been invited to participate in the annual meeting this year? Grapevine says that the meeting is next week.

Since Rob Tison has passed away, I'm hoping that someone might be there to bring some questions, thoughts to the table on behalf of all of us who want that project to succeed.

Thanks, all.
 
I'm glad to see this post. Being recently diagnosed I went to the ALS Registry and after searching around that site and reading I was disappointed that they didn't have any information released showing some progress on statistics they could share with the community. So I didn't sign up. Now correct me if I'm wrong and they have someplace where they share some simple US demographics from this registry.
 
I'd be willing to attend if I'm able to make it.

Where is it going to take place? Washington D.C.?


Thank you.
 
R9,

All we have are these reports --

CDC - Amyotrophic Lateral Sclerosis: ALS Reports

The process is longitudinal, and they have a large time lag on some of the files that they get from other government agencies to mine the data, but I personally find the lack of even simple status statistics (after all this time and money) puzzling.

That said, I do believe that the self-enrollment is critical and encourage all U.S. PALS to do so. It's the only way to insure that your data clues are captured.

N,

The annual meeting is invitation only. Thus my search to try to find PALS who may have been invited.

All,

I'm still very interested in touching base with any PALS who may have been invited this year. Rob Tison had gone last year and was a valued and valuable voice who died way too soon.


Also, if anyone else thinks that it's time to open up the curtains on the annual meeting and let PALS see and hear the annual meeting live, perhaps emailing [email protected] will get the CDC to change its mind and live-stream the meeting.

Thanks, all. This is an important project, and it's also an important time to have some discussions about the project.
 
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