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    • #15987
      Amanda
      Keymaster

      Several recent articles discuss research related to gene silencing or RNA. It seems to me that this is heading in the right direction to treating genetically linked ALS cases. Have you been involved in any of this research? Do you think this is the right direction for ALS research? What are your thoughts based off the articles? Have you found other information from other resources you can share?

       

    • #16282
      David Crellin
      Participant

      I have C9ALS, first signs March 2019, diagnosis March 2020. Having researched family tree I now note my mother, her sister and son, all had/have either ALS or FTD. I’m looking further back for indications.
      My two sons are arranging genetic testing for themselves. My sister’s adult children now have to choose.
      I am trying to get on the phase 1 trial of BIIB078/ CnRx in the hope that this will silence the multiple repeats of G4C2 in the C9orf72 gene.
      So, I am very much in favour of genetic therapies to silence genes.
      I am in the privileged position of having friends in senior positions in genetic therapy pharmas, so keep up to date with developments, I fear more so than my consultant.

    • #16304
      Chad
      Participant

      Silencing genes sounds good to me for genetic ALS.  What kind of test does one need to get to find out if he or she has a genetic linked ALS???   Is the testing done at the local ALS clinics???

    • #16310
      Amanda
      Keymaster

      Chad,

      You can have genetic testing done with a blood test. If you are interested in participating in any of the research studies that is usually the first step in the process.

      Amanda

    • #16314
      Chad
      Participant

      Ok thanks Amanda.  I need to get that done.

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