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Thread: Advocacy Day Registration Now Open

  1. #1

    Advocacy Day Registration Now Open

    Advocacy Day Registration Now Open
    February 19, 2008
    The ALS Association is pleased to announce that online registration for the 2008 National ALS Advocacy Day and Public Policy Conference is now available on The Association's website at www.alsa.org/policy/alsday.cfm.
    You may also access an electronic copy of the 2008 Registration Brochure that includes a detailed schedule of events for this year's conference, which takes place in Washington, DC May 11-13. Hotel information and details on registration fees, including early bird registration deadlines, can be found in the brochure.
    Conference Schedule
    Please note that this year's conference begins on Mother's Day, Sunday, May 11, and we will have a family barbeque Sunday evening to honor mothers who play such a crucial role in every family that has been touched by ALS. The conference also will feature the annual Candlelight Vigil at the World War II Memorial as well as breakout sessions that will include advocacy training and policy updates on issue such as the ALS registry at the CDC.
    In a change from previous years, we will hold a Celebration of Excellence Breakfast and Awards Presentation on the morning of Tuesday, May 13 prior to our meetings on Capitol Hill. Once again, PALS attending the conference will be able to donate blood samples for the NINDS genetic repository beginning Monday morning. For those arriving in Washington before the conference opens, the DC-MD-VA Chapter will be organizing a group of PALS and families to attend a Major League Baseball game between the Washington Nationals and the Florida Marlins at the Nationals' new ballpark on Friday, May 9 (additional information is included in the Registration Brochure).
    The most important part of the conference - Advocacy Day on the Hill - takes place on Tuesday, May 13. Through these meetings with Members of Congress from across the country, we are telling the ALS story and realizing significant advances in the fight for a treatment and cure. For example, since last year's Advocacy Conference, we have:
    • Passed the ALS Registry Act in the House of Representatives by a 411-3 vote and secured the support of more than two-thirds of the Senate as cosponsors;
    • Partnered with the Department of Defense as it has provided $5 million for the first ever ALS Research Program, which is focused on translational research; and
    • Worked with Congress to appropriate an additional $3 million to continue the ALS registry at the CDC.
    These are just a few of the accomplishments that advocates have achieved as a result of Advocacy Day and their year-round outreach to Congress - outreach that resulted in the federal government delivering more than $60 million in funding for ALS research in 2007 alone!
    We hope you will join us in Washington, DC this May as we turn fear into hope and hope into action. Together, we can create a world without ALS.
    If you have any questions about this year's National ALS Advocacy Day and Public Policy Conference, please contact the Advocacy Department toll-free at 1-877-444-ALSA or advocacy@alsa-national.org.
    We look forward to seeing you in May!

  2. #2
    Super Moderator Sue Pendleton's Avatar
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    Great post and wonderful news on what has been accomplished Bobby! I didn't know about the blood registry at the CDC. Please feel free to post this to Announcements and Feedback Forum also. Might get more hits there.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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