als registry

  1. TedH5

    ALS Registry meeting...

    Please help. Late next month, A friend will be serving as a panelist with the National ALS Registry team with the ATSDR / CDC for the 3rd time, as a PALS representative. He has been asked to give about a 15 minute presentation on PALS’ perception of the Registry and especially to discuss ways...
  2. R

    U.S. National ALS Registry Administered by the CDC

    This is PALS who may be new here. Please be sure to self-enroll in the U.S. National ALS Registry. This is extremely important. It is the central registry for ALS cases in the U.S. Physicians do not report cases of ALS to the government the way they do cancers and some other diseases. ALS...
  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. hjlindley

    National ALS registry

    I am sure many of you PALS have already done this registration, but the more of us that fill it out, the closer we get to causes, and treatments. I know it takes a while, but it will be worth it to all of us to do so. One day at a time.:smile: CDC - Amyotrophic Lateral Sclerosis (ALS)...
  5. momap53

    CDC National ALS Registry

    First Anniversary of National ALS Registry Centers for Disease Control and Prevention ATSDR celebrates the first year of the National ALS Registry. The goal of the registry is to help scientists learn more about ALS. Help us defeat ALS! This article appeared in my FaceBook CDC news feed this...
  6. retiredmus2010

    Senate Committee approves $6 Million

    Excellent news everyone! The Senate appropriations committee has voted to provide an additional $6 million for the ALS Registry in 2012! I am hopeful that the Senate is making ALS a priority. Our work is not done, however, The full Senate must still vote on the Dep of HHSA bill that includes...
  7. NatalieD

    Registry

    I read that the new ALS Registry is only for those who are living with ALS...is this correct? If so, this is highly disappointing, and makes me angry. :|
  8. R

    Anyone do the new registry?

    Has anyone gone to the new ALS registry? Should I enter my sister who passed away 3 wks ago? Do you think her information would be important. I got the letter about the registry a couple days after the funeral and I wasn't ready to think about it. I'm still angry at the neurologists and everyone...
  9. joelc

    ALS registry is up and running

    The National ALS Registry is Here! All People with ALS Can Enroll in the Registry TODAY Dear Friend, The ALS Association is thrilled to announce that the National ALS Registry is now fully operational! Every single person with ALS across the country can begin enrolling in the Registry today...
  10. R

    U.S. National ALS Registry Is Open for Self-Enrollment!

    Finally it's here ... https://wwwn.cdc.gov/als/AboutRegistry.aspx I encourage all PALS who are U.S. residents to enroll. In the past, the clues from patients' health histories and environmental exposures were not retained. Imo it has been disrespectful of those who have had ALS that we did...
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