alsa

  1. F

    Just Checking In

    Good morning, all... First of all, I do apologize for my somewhat lengthy disappearance from the forums. I was in a tailspin following that late April appointment at the ALSA Center of Excellence for a second opinion. At that initial second opinion meeting, the Director of that Center noted...
  2. Nuts

    ALS Association Survey

    We've had folks mention their desire to see the ALSA focus on different areas of support. Please consider taking this sort survey that asks what we think their priorities should be for increased funding and support. Email - ALS Association Care Services Survey - The ALS Association
  3. Nuts

    ALSA Taking Input from PALS and CALS Tuesday

    There is no link in this post, which I copied from the ALSA Facebook Page. You can go there to find the link to register The ALS Association June 14 at 11:09am · Global ALS Awareness Day is Tuesday, June 21, and we’re commemorating the special day with a virtual listening tour event! People...
  4. L

    Hello. I'm at a loss...

    Hello again. Thank you for taking the time to read (and possibly respond) this this post. I am at a total loss. I'm now 39, and I have tried to get answers for a little over a year, but I just keep getting insidiously worse. I don't know who to ask or what to do. I am very well aware that you...
  5. lgelb

    Draft FDA Guidance Document

    Just a reminder that public comments on this document are due by the 30th. And a side note: for those of you hunting prognostic markers/measures, a number are mentioned in recommending possible outcome measures for clinical trials. Not all of them are based on equally good data, but they may...
  6. kevinw

    MDA verses ALSA Clinic

    After going to a MDA clinic for 8 years I have been thinking about changing. My ALS Neurologist is top-notch, it's everything else that seems generic. Has anyone pulled off a change of clinics after so long? What did it entail? Would they accept my existing records (two 3 to 4 inch folders) or...
  7. Nuts

    ALSA Advocacy Day 2016

    We dropped Heidi off at my son's place and made it to the hotel last night. An old Air Force friend of mine who has MS is supposed to drive into DC with his wife to have lunch with us and (hopefully) get some inspiration from the guy with ALS. It's starting to look like a catch up on sleep day...
  8. D

    ALSA’s Advocacy Day and Public Policy Conference

    To all PALS and CALS who have experienced shortfalls in the provision of DME and home health services (meaning, I suspect, all of us), you may be interested in knowing that these huge problems are not on the list of the ALS Association’s priorities for its “Advocacy Day and Public Policy...
  9. A

    A tribute

    My nephew wrote this for May ALS awareñess. A tribute to all of us ALS fighters... already it's may. baseball has been back for a month. the days are growing longer. sometimes, they start to blur together. it all becomes routine. I wake up in the morning and drive into work. I go to the...
  10. lgelb

    Equipment sources/places to donate

    Besides the usual suspects (MDA and ALSA), many communities have mobility closets of some kind. Here is one such list by state. For technology items, there is a separate list. For used BiPAPs, this is a good starting point to donate, sell and buy. Dotmed and Bemes offer other options, the...
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