Viewing 6 reply threads
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    • #21573
      Dr. Bernie Gryfe
      Participant

      My wife’s brother passed away from ALS at the age of 61

      My wife passed away from ALS at 74

      My son has been advised he carries the gene. Is he definitely a candidate for ALS, or what are his chances of missing the disease.

    • #21574
      Susan Baker
      Participant

      I am so sorry to hear that. It depends in what gene they found(there are many!) and the penetrance of that mutation. We have a Familial ALS group on FB if you would like to join us there and learn more. My family has lost 5 to FTD FALS, so understand.

    • #21575
      Dr. Bernie Gryfe
      Participant

      Would really like to join the group. What do I have to do??

    • #21578
      Susan Baker
      Participant

      Great! Once you are logged into your Facebook account, click on this link. Please answer the questions that we pose to prospective members and you should be admitted soon. We have many members in the group that can answer any questions you have and offer support. For those with the C9 mutation, there are a few other FB groups that focus on that gene.

      Here are 2 other resources that may be helpful to your son as well: Synapticure and I AM ALS. We also have groups that are only open to caregivers and to those living with ALS. I’m always happy to connect any members of your family with groups that may be helpful to you. Many hugs!

    • #21582
      Christa Engel
      Participant

      So sorry to hear about your family situation. I recently found out I am in the same situation. Lost my grandfather in 1993 to “unknown metal” disease. My maternal uncle passed away at 60 in 2017, FTD symptoms began at 45. Lost my mother(65)to ALS March 19th of last year. I(40)have similar symptoms to my mother and will begin my journey at the Mayo clinic in June. Thinking of you and your family.

    • #21587
      Carol
      Participant

      Question please. Anyone understand what the difference is between regular copper levels and free copper levels? And how they can help with diagnosis?

    • #21612
      Amanda
      Keymaster

      Dr. Bernie,
      Hello , there are many types of genetic mutations that can be inherited. Has your son been tested for those mutations? That would be the first step. There is a 50% step that he inherited the mutation. Even if he inherited the mutation that does not guarantee he will get ALS, that means he has a higher risk of getting ALS. There is a pre-fALS study that I am in because I have genetic mutation that I inherited. If he is interested in learning more about that please feel free to message me. We can talk and I can share some contact information. They are still looking for participants. When I enrolled they did th genetic counseling and genetic testing free of charge as part of the study. Of course there is more to it than just that, but if you are interested feel free to contact me. I’m always willing to help and share information.

      Also, the Facebook group are great. I need to get more involved with those!!!
      Amanda

      • #21613
        Amanda
        Keymaster

        Christa,

        My reply is open to you and anyone else interested in the pre-fALS study.  I’ve posted information about it on the forums before. You should be able to find it using the search tool too. I’m always willing to talk or message about the program if anyone is interested.  Anything to help!!

        Amanda

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