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  1. lgelb

    Exposé of Dr. Goodenowe in Canada

    We have talked about his quackery and five-figure fees in the past, but CBC just did a pretty detailed investigation. And the cautionary tale of the promotional tactics used, including the assertion that they are not a medical facility, and using a video of a now-dead PALS as social proof, is...
  2. lgelb

    Past CALS' poem

    Saw this in a local paper -- thought someone might appreciate it. https://myedmondsnews.com/2025/05/poets-corner-a-l-s/
  3. lgelb

    Lilly makes another ALS deal

    Story here. Lilly's multiple ALS bets are a good thing as they are typically pretty shrewd dealmakers.
  4. lgelb

    Summer preparedness

    Seeing this article reminded me that hurricane/summer travel season is coming...with fewer resources available all around for people in the US with disabilities. So a few suggestions: --Keep your backup BiPAP battery charged --If you travel by ferry at all, get a "priority boarding" form filled...
  5. lgelb

    If you value clinical research, disease control, and/or patient care...

    You might want to dial up the US Capitol switchboard: 202 224 3121, ask for the office of your Senator or Congressional representative, and give whoever answers the phone a little ALS context for the forthcoming confirmation votes and other measures to come. Already, thousands of scientists in...
  6. lgelb

    Dragon alternative: Utterly Voice

    For Windows only, Mac version planned. Free for now. The way it works for Web browsing seemed particularly useful.
  7. lgelb

    NDA filed for NP001

    More here.
  8. lgelb

    PrimeC and ibudilast

    Cipro and Celebrex, the brand names for the compounds in PrimeC, both have cousins that were withdrawn from the market (Tequin and Vioxx, respectively) and black box warnings for events such as tendon rupture and heart attacks, respectively. Neither is considered first line therapy any longer in...
  9. lgelb

    Boston Children’s AAC Program seeks P/CALS input

    An introductory video explains the project’s goals — which include developing AI-enabled AAC to help PALS communicate in real time. The survey consists of 33 questions for PALS; 15 questions for caregivers/family; and 18 questions for clinicians.
  10. lgelb

    Patient advocacy caveats

    This article, while not very thorough, highlights some of the troubling aspects of groups and individuals that are positioned as representing P/CALS. https://www.medscape.com/viewarticle/do-neurology-patient-advocacy-groups-wield-too-much-power-2024a1000fk9
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