conference

  1. K

    Officially diagnosed

    I've been kinda hiding in the background and reading all that I can from everyone here and have decided it's time to come out of hiding or more likely denial. I was diagnosed in March of this year after a four day hospitalization that included several MRI's, numerous lab tests and an EMG. I...
  2. 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...
  3. Grace89

    Advocacy Conference 2016

    Is anyone planning to attend the ALS Advocacy Conference in Washington,D.C.? May 8-11
  4. A

    Annual national als conference

    I am so thrilled that the song ALS ODYSSEY ANTHEM will be performed at the 2016 conference in February in Atlanta! Very exciting. You can listen to this song for a cure on YouTube.
  5. S

    In Michigan for opinion number ... six?

    Hi all, As I've mentioned here before, I've been trying to pin down a definitive diagnosis for the past two years or so. I was diagnosed with hereditary spastic paraplegia at Houston Methodist, but I don't have a family history or clear genetic evidence. My symptoms have changed a lot...
  6. S

    Back on the diagnostic merry-go-round

    Hi all, As many of you know, I was diagnosed with Hereditary Spastic Paraplegia last summer. The only definitive way to diagnose it is through genetic testing, which I had done recently. My results did show a mutation, but it was a rare one of "unknown certainty". So, it might be the...
  7. S

    Heading to HSP/PLS conference in Seattle

    Hi All, Well, as my title suggests, I am about to head to Seattle for the Spastic Paraplegia Foundation's conference on HSP and PLS. I am excited about meeting other people with these disorders (mine is presumably HSP), but I am also nervous about seeing what "the future" might look like for...
  8. R

    ALS Advocacy Events - May, 2015

    This week there are several advocacy events ... a.) ALSA Advocacy Conference -- Here's the attendee packet. b.) Hope Now for ALS Rally -- Here are details. I hope that people attending a.) will stop by for b.) (Which is about much, much more than GM604. It's about faster paths to get...
  9. A

    Washington DC ALS Advocacy Conference May 10-12

    This year the conference in Washington DC iis May 10-13. My husband and I are considering attending and I do like the idea of getting a chance to speak with state senators and representatives. It will be a long trip, though, so we do have some hesitation/concern about going. Have any of you...
  10. MaxEidswick

    Nancy Frates note

    Nancy Frates with Pete Frates and 4 others Hi Everyone - Just returning from ALSA meeting in Tampa. Briefly here is my update: 1. I am overwhelmed to have met all the staff who work in National and all the Chapters around the US. Most of them have been on the horrific ALS journey with a loved...
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