als registry

  1. K

    Research Study

    I lost my Dad, Jeff Long (who was active on this site), in October of 2015 to ALS. I am currently looking at the Infant Feeding Characteristics of Patients with ALS with the University of North Carolina at Chapel Hill. The information is listed on the National ALS Registry website...
    • karsey
    • Thread
    • als als registry carolina cdc dad feeding information never give up research survey website
    • Replies: 2
    • Forum: People with ALS (PALS)
  2. B

    Article about demographics etc for ALS reversals (Dr. Bedlack)

    I follow Dr. Bedlack on twitter and this popped up yesterday....really interesting. Makes me want to try some of the supplements they mentioned: "The odds of taking curcumin, luteolin, cannabidiol, azathioprine, copper, glutathione, vitamin D, and fish oil were higher for cases than for...
    • Babycakes
    • Thread
    • als als registry clinic clinical diagnosis family improvement love media motor neuron disease myasthenia gravis oil onset possible als statistics supplements treatments vitamin d
    • Replies: 10
    • Forum: Research and trials
  3. Lkaibel

    And So It Is...

    We were diagnosed this morning. As I think some part of me has actually known since April 2nd when he came and showed me that his left toes did not rise up as high as his right (drop foot) my husband was told he has ALS. We had a whole clinic day actually, and Brian is very interested in...
    • Lkaibel
    • Thread
    • age als als registry back clinic clinical diagnosed dihals foot genetic genetic testing hope info life love pain planning progression quality of life reading slow progression testing wrong
    • Replies: 39
    • Forum: Newly diagnosed
  4. A

    A cat and a human getting ALS while living at the same house

    At about the same time I was in my home country taking care of my mom, and while I was starting to have symptoms of ALS, I noticed that our female cat was loosing strength in her legs. As she continued to deteriorate, she was loosing weight, the muscles around her spine were shrinking and the...
    • Alex123
    • Thread
    • als als registry bed breathing cats cold early female food hearing muscles reading stages symptoms symptoms of als
    • Replies: 13
    • Forum: General discussion about ALS/MND
  5. Atsugi

    Increased funding for ALS research

    I received this today: Dear Michael, Thanks to your efforts and those of thousands of other ALS advocates, Congress has taken significant action during the past month to support the fight against ALS. The updates below reflect the power of your advocacy and demonstrate that the ALS...
    • Atsugi
    • Thread
    • advocacy age als als registry als research eye fda health increase power research senate speech support treatments
    • Replies: 3
    • Forum: Research and trials
  6. M

    ALS registry

    Hello: this may be a no-brainer but I wanted to ask anyway. Is it safe to say that most of you would advise joining the ALS registry if indeed you have been diagnosed? Or does it pigeonhole you and possibly disqualify you for later trials that may arise? Thanks very much
  7. R

    US ALS Registry - First Data Published

    Here is the report -- http://www.cdc.gov/mmwr/pdf/ss/ss6307.pdf And some comments -- ALS Advocacy: We Need To Talk! An Economist and pALS's Response to 'Prevalence of Amyotrophic Lateral Sclerosis --  United States, 2010-2011' | Stephen Finger ALS Advocacy: Who Are The 15 Percent?
  8. 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...
  9. 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...
  10. 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...
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