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    • #15488
      Amanda
      Keymaster

      Most cases of ALS appear to be sporadic; however, about 10% of pALS have a genetic mutation linked to ALS. In Europe there is some conversation about having newborns tested for genetically related rare disease. https://alsnewstoday.com/2020/05/25/eurordis-urges-expansion-of-newborn-screening-initiatives-across-europe/  For some disease this could mean addressing the needs of a child prior to the child suffering. In other cases, it could help to reduce the amount of time it takes to get a proper diagnoses and avoid misdiagnoses.

      Although ALS  typically does not strike children or younger people,  for families with a history of ALS, do you think knowing if your child had a mutated gene associated with ALS would be beneficial? Would knowing you or your child had the mutation change your way of living? How would having this informaton effect  you as a parent?  What do you think about genetic testing of newborns for rare diseases?

    • #15502
      Bill
      Participant

      I am for testing my kids for any als-FTD mutations. Both of my adult sons would like to know, but testing  has yet to find my family’s mutation. I’m hoping by the time my kids reach my age we will have a treatment. The sooner they knew the better.

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