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Familial MND

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    Familial MND

    Hi I’m Andrea, back in Feb this year my mum and sister were both diagnosed with MND we now know it’s hereditary my sister is much further advanced in her journey than my mum. I have just been for a genetic test to see if I carry the gene too but won’t get the results until January. Is anyone on here that has it in running in their family ? Feeling a bit lost at the moment as how to best support my family .

    Sadly I found that I have Bulbar onset due to my mother's genes. She died of Altzimers and I am the first with MND. Life is a bitch. 😉😃x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


      Hi AndiH

      Husband has no family history.

      Wow 2 family members at the same time, just so sorry to hear this.

      Both of my parents diagnosed with dementia within 6 months of each other in their 50s, I assumed that I would get early onset.

      My advice/experience is get as much help and information as possible.

      Ask the MND association if there is support for people with familial MND.

      good luck with the results in January

      Kind regards


      Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.


        Welcome to the Forum, Andrea.

        I'm sorry to hear both your mum and sister were both diagnosed in the same month. Familial MND is cruel enough, but to have both diagnosed more or less together is truly awful for you. Do you know which gene abnormality they have?

        Sorry too that you have such a relatively long wait for your results - no point in saying try not to worry, but do be kind to yourself and I just hope the weeks go by quickly, especially given the time of the year.

        Yes, there are members here with Familial MND - I think most are C9orf72 - and you can always ring the MND Connect helpline (see tab above) who are great.

        Do you mum and sister have good support from their clinic(s) and community? Nurse, Occupational Therapist etc.

        Love Ellie.

        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


          Join the club. My mother died in 1976 with MND. I was told that it was not inheritable. How times have changed!
          After a year of investigstions, I was diagnosed with c9orf72 related ALS on 3 March this year. I've been researching my maternal family tree and BINGO. So far within two generations I count five of us with either ALS or Fronto-Temporal Dementia. FTD anf ALS are related and there are records of up to 32 family members having either or both. I keep looking.
          So, what results have people had? Which gene - SOD1, c9orf72, or the host of newly discoverwd gene mutations?
          My younger son is about to get his genetic test results on 23 Dec- perfect timing. Either Happy Christmas, or.....
          Last edited by Crell; 15 December 2020, 11:38.


            Dodgy genes? I shared one with my first wife and our baby daughter died of DMS and now one from my dear departed mum has given me MND. Life sucks 🙂x
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx