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.

Wednesday, June 16, 2010

Wanted! A Working ALS Registry


This was a nice surprise from the MDA --
Representatives of the Agency for Toxic Substances and Disease Registry (ATSDR) within the Centers for Disease Control and Prevention (CDC) will lead a webinar for the MDA ALS community. Following the passage of federal legislation, a National ALS Registry is being built by ATSDR; please join us on Tuesday, June 22, at 2:00 p.m. EDT, 11:00 a.m. PDT, for an overview of this initiative.

Date and Time: June 22, 2010, 2:00 p.m. Eastern Time; 11:00 a.m. Pacific Time
Event address for attendees:
https://mdaevents1.webex.com/mdaevents1/onstage/g.php?d=664792112&t=a
Event password: MDAwebinar2010
Call-in toll number: (650) 429-3300
Teleconference Access code: 664 792 112
Log on using the event address link provided above. Once you are logged on, phone in by calling (650) 429-3300 and enter the Access Code and Attendee ID number provided when logging into the event. Normal long distance phone changes will apply to the call.
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Some information will be welcome since it seems like it is taking an eternity to have a delivered and working ALS Registry. Every month that it takes means that we lose the clues of over 500 Americans who die from ALS. Every month.
Since the Agency for Toxic Substances and Disease Registry is in charge of this effort, we hope that the BP oil disaster won't distract from the ALS Registry but might actually move it up the priority ladder.
Many of us will be listening on June 22 and are grateful for this opportunity.

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