• Susan became a registered member 1 year, 11 months ago

    • Hello Susan,
      Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010. If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns or even suggestions, just let Amanda (my co-moderator) or me know, and we will do our best to help you. Again, thank you for joining our forum – – I look forward to chatting with you!

      • Hello Dagmar,
        Thank you. I recently found out that I have the C9orf72 gene with too many repeats. So it fALS for me and FTD for my younger brother in his 50’s… ( my father FTD in his 70’s and his father ALS in his 50’s) I would be very interest with other with this gene and what they have done. Thank you.

        • Amanda, who shares Forum moderating with me is a fALS. She will be a good resource and helpful support for you. You’ll be hearing from her soon. 🙂

          • Thank you!

            • Hello Susan, Thank you for joining the group! I have the SOD1 gene mutation, but do not have ALS yet. I have volunteered for several studies, one (pre-fALS out of the University of Miami) is ongoing. I go at least once a year and do a lot of the tests that they do when they are trying to rule ALS in or out. They also collect blood, urine and spinal tap fluid from most participants. One of the goals is to find biomarkers much earlier, before ALS is typically diagnosable. They are also working on a gene therapy drug which they are now in a clinical trials for as we speak. I’ll be going to Miami during December, so hopefully I’ll get some more updates on the research. I do know that they are also looking at the C9 mutation, but I haven’t asked to many specifics about that mutation.

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