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  • Users: Nikki J
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  1. Nikki J

    Vaccines

    If you have any vaccines that you want and have been procrastinating about get them now. Vaccine coverage under medicare part d is determined by what is approved by the fda/ cdc. You may have seen the old vaccine committee was fired. A new one has been appointed and will be meeting June25-27...
  2. Nikki J

    Kristina1

    I recently learned that our dear Kristina passed away last November. She was active her during the first years of her diagnosis until she ended up on a vent Kristina was diagnosed so young and she leaves her three children , her dear husband and many family and friends A brave and loving...
  3. Nikki J

    Nurown 3b trial listing posted- not yet recruiting

    https://clinicaltrials.gov/study/NCT06973629?fbclid=IwY2xjawKTW-JleHRuA2FlbQIxMABicmlkETFad3FJeTIxVHJST3BUT1MyAR6uwLqwP7SKG5XfMHV2O_Fz1CfRPhHfmvU8okc3xz_gdu7zi8ESDMarmWWT6g_aem_EEwRgvLlSq8eupf4jla10Q
  4. Nikki J

    Online PLS Informational / support session

  5. Nikki J

    Interleukin-2trial

    Mixed but hopeful results in a large and long phase 2 trial. It did not meet the primary endpoint but there was a significant survival difference between those who received drug and placebo in the pre specified slow progression group( defined by csf nfh levels. ). You will see at the end they...
  6. Nikki J

    Webinar on choosing a communication system

    https://airtable.com/appmv67LH3qRovvGt/pagzHH1KzWwLunIQC/form
  7. Nikki J

    Lighthouse II terminated for futility ( Triumeq)

    https://www.tricals.org/news/lighthouse-ii-study-terminated-after-interim-analysis
  8. Nikki J

    Carrier studies

    If you are a documented FALS carrier in the US everythingals dot org has an all remote study and is recruiting. It will link to Prevent if you are in that. Prevent is a hybrid study - once yearly in person and two remote visits in between. It is for asymptomatic carriers and first degree...
  9. Nikki J

    Microbiome study

    This is open to PALS, carriers and healthy controls. No active GI disease, no feeding tubes It can be done remotely
  10. Nikki J

    Webinars

    There are a lot of webinars that can be good resources. I can’t link due to donation buttons on their websites and forum rules but you should be able to google The neals consortium has webinars on both research and life with als Everythingals has experts about every other webinar mostly on...
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