advocacy

  1. Sequoia

    What is true ALS advocacy?

    We want today’s ALS patients to have a shot at being the first ever to overcome their disease. That’s a lofty goal for a population that, since its first identification in 1869, has never once had a treatment known to be effective at stopping or even significantly slowing the disease’s rapid...
  2. shelleynshaggy

    It's been a long time !

    I apologize - it has been so long since I last have been on here I almost forgot how to post! Life has been a lot of the same old same old. Jim is progressing slowly, though some of his ALS symtoms have been coming up. He has lost weight yet again. His breathing is stable but he has lost a lot...
  3. A

    Urging Congress to support ALS Registry

    Urge Congress to Support the National ALS Registry We need your help TODAY to continue funding for the National ALS Registry. U.S. Representatives Eliot Engel (D-NY) and Peter King (R-NY) are circulating a letter requesting the House Appropriations Committee provide $10 million in funding for...
  4. TedH5

    Georgia Advocacy, Education and Awareness Day

    All members of the ALS community who reside in Georgia, please be aware that myself along with a couple of others have arranged an Advocacy, education and awareness day at the State Capitol on March 7th from 8:30 a.m. - 12:30 p.m. If you are interested in attending or have any questions please...
  5. Sequoia

    Salute to veterans who have ALS

    The ALS Association launched a national campaign to raise public awareness of our military heroes fighting ALS and those who have been lost to the disease. The campaign will continue through Veterans Day on November 11th and will deliver key messages about the connection between ALS and military...
  6. TedH5

    The ultimate story of hope

    Let me first apologize. I know that I have not been on the forum over the last 3 months. Not a day has gone by that I have not thought of my "forum family" and have continued to keep all of it's members in my prayers. Many have visited me on FB and asked me how I was and relayed everyone's...
  7. mare

    Congratulations Zenarcher!

    So, just back from a very busy 3 days in DC at the ALSA Conference & Advocacy Day. Yesterday (Tues.) was the day to go to "the Hill"; there was a "Celebration of Excellence Breakfast" for all first. Some speeches & then 3 different awards are announced, one of which is the Rasmussen Advocate of...
  8. shelleynshaggy

    Anyone going to Washington DC ?

    Just wondering if anyone from here was attending the ALS advocacy event in DC next weekend?
  9. R

    ALSA Advocacy Conference - New Agenda Item

    In case anyone was waffling about going... this was just sent out from ALSA and tells of an interesting new session added to the conference agenda -- Jay Daugherty, Chairman of The ALS Association Board of Trustees, and Jane Gilbert, President & CEO, will host a Town Hall Meeting at this year's...
  10. R

    The Ultimate ALS Awareness Tour - Piece by Piece 2011

    Besides keeping up their outstanding ALS awareness presence within the Sunshine State, the folks from the ALSA Florida Chapter are hitting the road in a big way in May. If you're in Chicagoland, mark your calendars for May 3-5... right in the heart of downtown Chicago. I hope that this might...
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