cdc

  1. lgelb

    First ALS Registry report

    Is here. I encourage anyone not in the Registry already to join, though archaic infrastructure has constrained its innovativeness. Data is our best hope of power over this disease. My husband also participated in the biorepository feasibility study that is mentioned in this report. I would...
  2. adozi

    Warning -- not all clinics are equal

    So i was going to a great multidisciplinary clinic in Nashville, but we moved to Louisville. I assumed all the clinics on the CDC ALS clinic locator were multidisciplinary, so i asked to be transferred to the MDA clinic in Louisville. But it's just a doctor! Why even call it a clinic if he just...
  3. AfraidButNotAlone

    CDC ALS site

    Logging in to the ALS site requires that your password have: at least 1 lowercase at least 1 cap at least 1 special character or number Typing is hard enough already
  4. L

    PALS in Vt and. Rhode Island

    PALS are needed in these two states. I tried to volunteer, but they had enough volunteers in VA. Very simple to do. They come to your home to take samples. You must be registered with the CDC's ALS registry to participate. CDC - Amyotrophic Lateral Sclerosis: ALS BioRegistry Contact...
  5. T

    BFS forum post... Very beneficial to those twitchers!

    Moderators: JohnV, Arron, garym Post a reply 30 posts • Page 1 of 2 • 12 Back from neuro by Bart1 on June 4th, 2008, 4:29 pm Hi everybody, Got back from the neurologist. First things first. His words, and the most important ones: this is NO ALS. (I’m going to try to give as much...
  6. R

    US CDC ALS Registry Annual Meeting?

    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...
  7. M

    Trying to figure this weakness out....

    Hi everyone.. I have been reading posts for months and finally have the courage to ask for opinion/advice. Here is my short story..Jan 2102 got pertussis.. turned into indigestion..Hit my nervous system in April 2012.. Chronic Thoracic Back pain left of my spine with headache for months. Had...
  8. J

    ALS Diagnosis 12 years ago

    Sharing from a friend with a link to a post on my blog about him Dear Joanne would you please translate this to English? Its a column to have been underwritten wooden i will send to ILADS guys! borreliasyk I've been in 12 years. Like many others, I have not been believed that the Norwegian...
  9. 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...
  10. 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...
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