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Latest Updates

  • 2023 Golf Tournament Registration
    WHEN โ€ข FRIDAY, OCTOBER 13, 2023 โ€ข REGISTRATION AT 7:30am โ€ข SHOTGUN START AT 9:00am WHERE MISSOURI BLUFFS GOLF CLUB โ€ข 18 Research… Continue reading 2023 Golf Tournament Registration
  • CAMSAP1: Officially a Disease Gene!
    ๐“๐ก๐ž ๐€๐ฆ๐ž๐ซ๐ข๐œ๐š๐ง ๐‰๐จ๐ฎ๐ซ๐ง๐š๐ฅ ๐จ๐Ÿ ๐‡๐ฎ๐ฆ๐š๐ง ๐†๐ž๐ง๐ž๐ญ๐ข๐œ๐ฌ ๐‘๐ž๐œ๐จ๐ ๐ง๐ข๐ณ๐ž๐ฌ ๐‚๐€๐Œ๐’๐€๐๐Ÿ (๐š๐ง๐ ๐‹๐š๐ง๐๐จ๐งโ€™๐ฌ ๐‹๐ž๐š๐ ๐ฎ๐ž ๐…๐จ๐ฎ๐ง๐๐š๐ญ๐ข๐จ๐ง!) “There is nothing you can do about it. We’ll revisit this in 2 years. Try to have a good rest of… Continue reading CAMSAP1: Officially a Disease Gene!
  • Our CAMSAP1 Families
    Meet Landon “Hello everybody, my name is Landon! In 2018, my family found out that both copies of my CAMSAP1 gene were mutated.… Continue reading Our CAMSAP1 Families
  • Research Progress Update
    RESEARCH UPDATE “To know how to wait is the GREAT SECRET of SUCCESS” – Joseph De MaistreIn In February 2018, we initially received… Continue reading Research Progress Update
    ๐ŸŽ‰ Pardon the long post ahead, but we have a very exciting CAMSAP1 research update regarding advancements made studying Landonโ€™s mutation on the CAMSAP1 gene ๐ŸŽ‰
  • Rare Disease Day: Great News + Awareness
    The presentation above was delivered and recorded at the Arya Foundation’s 2020 Disability Awareness Convention on 02/23/2020. Complex topics like genetics are difficult… Continue reading Rare Disease Day: Great News + Awareness

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