1. R

    More Than Our Stories 2019 - A different kind of advocacy conference

    Please consider participating in the second annual Feb 12-13 in Washington, DC. This is a different kind of advocacy conference. No Powerpoint. No formal presentations. Lots of healthy discussion about government policies that can be improved for people dealing...
  2. lgelb

    Richard Thiede

    I just learned that Dick died in July. A former Marine, he became very active in ALS advocacy and we worked on some projects together. He fought for better VA care, spearheaded additional research funding, and helped PALS obtain wheelchair vans. RIP.
  3. Nikki J

    Gleason Act

    This passed 3 years ago and stopped medicare from making speech generating devices rentals. At the time this was a new policy ( before as it is currently devices were purchased and yours to keep) Renting meant if you went into hospice or had to be hospitalized the eye gaze or whatever was...
  4. R

    If you have a passion for ALS advocacy & good public policies, pls join us

    Please join us for something new Feb 13-14, 2018! Last February three of us did our own mini ALS advocacy day. We had some issues that were very important to us and wanted to get in front of the government appropriations process (which is already iced by the...
  5. David

    Leapcure Muscle Cramp Trial

    Do you have frequent muscle cramps? Have you been diagnosed with a motor neuron disease like Amyotrophic Lateral Sclerosis (ALS), Primary Lateral Sclerosis (PLS), or Progressive Muscular Atrophy (PMA)? If you’ve been diagnosed with motor neuron disease and meet the requirements listed below, you...
  6. 9

    Radicava with Kaiser

    Hi. My husband was diagnosed with ALS last month :( We have Kaiser Oregon. Has anyone successfully gotten Radicava with Kaiser? Any tips for advocacy for us? Thanks! Karen
  7. C

    Abnormal EMG - Feedback Appreciated

    Hi Everyone, I've been lurking for a while now but decided to post today after my EMG results came back in. I would like to preface by saying that I really appreciate anyone's feedback. No matter the outcome of my situation, this process has really opened my eyes and encouraged me to get more...
  8. D

    Need better care at home? This is what to do

    Send an email to the ALS Association president, Barbara Newhouse, at this address: bnewhouse (at) This is all you have to say: "Dear Ms. Newhouse, Please make home health care an advocacy priority." Optionally, you can also describe how a PALS has suffered from getting not...
  9. F

    Life is GREAT!

    Hey, all y'all... there are ever so many new faces in here, and I truly am saddened to be welcoming you, considering the price of admission to this exclusive club. It has been awhile since I've posted, but wanted to bring you all up-to-date on the goings on. Life has been good, but the life of...
  10. R

    Edaravone ( Radicut, Radicava ) Action Needed - Possible Access Program

    Important action item! There are indications that MT Pharma America (Mitsubishi Tanabe) may well be willing to set up an early access program for edaravone for people with ALS. It's very important that they hear from people to let them know that this would be used and appreciated. Here is...