alsa

  1. 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! https://www.morethanourstories.org 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...
  2. David

    ALSA PSA Appearance and Awareness Opportunity

    On behalf of the The ALS Association and Vitamin Enriched, a real people casting company in NYC, we reach out to PALS and CALS for participation in a public service campaign. We are looking for people who are living with mid to advanced stage Amyotrophic Lateral Sclerosis (ALS), and their...
  3. A

    Experience with Clinics in Los Angeles?

    My mom has a new patient clinic scheduled at UCLA next week. I notice they aren't on the ALSA certified list, although they are on the MDA list. From a few people (ALSA Regional Care Manager + an OT) she's heard that the Clinic at Cedars is quite good. Cedars is ALSA Certified. Any experience...
  4. O

    Advice on ALS Clinic Selection?

    Hello. My father was diagnosed w/ALS earlier this month at West Virginia University (WVU). The diagnosis and recommendation to begin Radicava was so swift from WVU that I suggested he get a 2nd opinion. We had the 2nd opinion at the Cleveland Clinic last week, and they want to re-run the EMG and...
    • OHDaughter
    • Thread
    • 2nd opinion advice als als clinic als clinics alsa clinic clinics diagnosed diagnosis emg father information neurologist questions radicava website wes work
    • Replies: 5
    • Forum: Newly diagnosed
  5. Buckhorn

    ALSA bag or backpack?

    Does anyone know where I can get a bag or backpack with "ALSA" or "ALS" on it? I've done an on-line search and can't find one. I do not see them on the ALSA website. Someone here (Becky??) mentioned she puts one on her husband's chair (because people are curious & the Trilogy is...
  6. 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) alsa-national.org 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...
  7. N

    Medical Cannabis for Symptom relief

    New to the forum, I was diagnosed 11/21/16, and have been using THC and CBD to combat the daily symptoms. I have been taking high concentrations of both daily, and am seeing the progression slow a bit. I vaporize and smoke since I still can. I'm assuming my fellow PALS want to know what...
    • Nick1439
    • Thread
    • alsa baclofen breathing cannabis cbd cramping diagnosed information medical oil pain planning progression riluzole sleep stiffness symptom symptoms thc treatment
    • Replies: 3
    • Forum: People with ALS (PALS)
  8. NothingButLove

    The results are in - it's C9orf72

    I got a call from the doctor at the clinic today. She reported the results were back from genetic testing. My wife has the defective C9orf72 gene. I have so many thoughts running through my head right now. I could create one big scatterbrained, disjointed post. It's probably best to tackle one...
    • NothingButLove
    • Thread
    • alsa back clinic clinical cure diagnosed fals family family member genetic genetic testing hope ohio reading research running symptoms technology testing video
    • Replies: 3
    • Forum: Familial ALS (FALS)
  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...
    • FrJn
    • Thread
    • ability advocacy age als alsa ball cost family hope life love muscles senate speech support trip voice voice banking wanted work
    • Replies: 1
    • Forum: People with ALS (PALS)
  10. KimT

    Permobil Seat Elevator

    Sadly, the squeaky wheel does get the grease. Last week Ability Medical Supply Company called me to let me know my wheel chair had been approved EXCEPT for the seat elevator. She informed me that I would have to pay $2,800. I knew they had spent a lot of time getting the order ready and...
Back
Top