1. S


    This is my first posting. My wife was diagnosed with ALS on 8/31/12. We were immediately connected with the ALS Clinic at Pennsylvania Hospital which has been outstanding. So even though we are just beginning this journey and my wife can still walk with a walker, as her caregiver I am being...
  2. J

    Worth reading and remembering! Makes living life more important.

    Lisa Beamer on Good Morning America.....If you remember she's the wife of Todd Beamer who said "Let's Roll" and helped take down the plane over Pennsylvania that was heading for Washington, DC back on 9/11. She said it's the little things that she misses most about Todd, such as hearing the...
  3. J

    Genetic screening in yeast reveals new candidate gene for Lou Gehrig's disease

    University of Pennsylvania School of Medicine Nov 15, 2011 Genetic screening in yeast reveals new candidate gene for Lou Gehrig's disease
  4. mare

    FYI for Pennsylvanians

    For anyone living in PA, there is a state funded program (run through Temple Institutes for Disabilities) called PIAT (Pennsylvania Initiative on Assistive Technology). I don't have any first hand experience with it, but learned about it from our assistive technology specialist. It is like a...
  5. B

    Bruno Turny Orbit Seat,Catnapper power lift chair

    My dear brother was diagnosed in January of 2008 with this disease. He passed in July of 2008. I have had these in storage since that time. Both are in extremely excellent condition.The chair was used maybe twice. It is big, but really comfortable. The Bruno seat was used maybe 4 times. It...
  6. shelleynshaggy

    Our Latest Clinic Visit

    On Wednesday Jim had his 3rd ALS Clinic appointment. The day started out with a commute of over two and a half hours to get to the Cleveland Clinic (which is about 25 miles away.) After being over an hour late his first stop was occupational and physical therapy. Interestingly enough despite...
  7. indigosd

    Advocacy Day

    I thought that this might be helpful for those of you planning to attend. :):) We won't be going, no way to pay for the trip and expenses. REMINDER: Advocacy Day Deadlines Dear Kay Marie, Have you registered to attend the 2010 National ALS Advocacy Day and Public Policy Conference May...
  8. B

    Wanted :toyota or odesey handicap van for saile

    We are looking for a newer oddessy or Toyota handicap van for sale that would be useful for an ALS person. Or if anyone has any leads on one as we live in Northwest Pennsylvania.
  9. A

    Anyone in Southest Pennsylvania see Dr. C. P. Binning?

    I have my EMG with him soon and wanted to know if anyone here has seen Dr. Binning and/or received an EMG from him. If so, how was he? How was the EMG process? How quickly did you receive your results?
  10. trying to stay positive

    60 Minutes to feature ALS Communication Technology

    Just got this email from ALSA CBS “60 Minutes” Segment to Profile Delaware PALS and the Innovative Brain Communication Interface Technology for ALS “60 Minutes” on CBS this Sunday, Nov. 2 is expected to profile Dr. Scott Mackler, diagnosed with ALS in 1999, and the Delaware man’s use of...