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bill alkofer

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@billalkofer

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    bill alkofer posted a new activity comment 1 year, 9 months ago

    How did you determine that the genetic mutation was on that specific gene? My father had Multiple System Atrophy. I have an ALS variant called Brachial Amyotrophic Diplegia. Both of these motor neuron diseases show a mutation in the C9orf72 gene. When I was first diagnosed my neurologist said that a genetic test showed no connection. I’m thinking…[Read more]

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      Amanda replied 1 year, 9 months ago

      Bill,
      My family has had numerous members who have had ALS (15) that I know of starting with my grandfather’s generation. Because of that one doctor out of the University of Washington in St. Louis did a study on our family which most of us had genetic testing. Those who had the mutation all had a mutation on the SOD1 gene. Then, a few years…[Read more]

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    bill alkofer became a registered member 1 year, 9 months ago

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      Amanda replied 1 year, 9 months ago

      Hello Bill, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]

    • Profile picture of bill alkofer
      bill alkofer replied 1 year, 9 months ago

      How did you determine that the genetic mutation was on that specific gene? My father had Multiple System Atrophy. I have an ALS variant called Brachial Amyotrophic Diplegia. Both of these motor neuron diseases show a mutation in the C9orf72 gene. When I was first diagnosed my neurologist said that a genetic test showed no connection. I’m thinking…[Read more]

      • Profile picture of Amanda
        Amanda replied 1 year, 9 months ago

        Bill,
        My family has had numerous members who have had ALS (15) that I know of starting with my grandfather’s generation. Because of that one doctor out of the University of Washington in St. Louis did a study on our family which most of us had genetic testing. Those who had the mutation all had a mutation on the SOD1 gene. Then, a few years…[Read more]

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 year, 9 months ago

      Hello Bill,

      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. You can also search for past topics or…[Read more]

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