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  1. M

    Genetic Testing

    Hi there, My family has been burdened with C9 - we’ve lost 6 amazing people in 2 generations, so far, including my mom, Godfather, and Gramma. I’ve struggled with anxiety over this disease for over a decade now. The anxiety presents itself in the form of symptoms and I trick myself into...
  2. V

    Husband is a possible carrier of c9 gene - anxiety over symptoms.

    Hi Everyone, My husband is 35 years old and has lost a cousin, an aunt, 2 uncles, (all to ALS) and currently watches his mom battle the final stages of ALS. His family carries the c9 gene. Upon visiting with his mom over Christmas (they live out of state) and spending a week surrounded by ALS...
  3. M

    I was finally diagnosed after my father

    This is my previous article link: Hello everyone, I returned after being diagnosed after 6 months of symptoms and tests. My neurologist concluded MND disease after a...
  4. T

    Familial ALS continued

    Hello- For the backstory on this thread, please see the original Familial ALS posting. Perhaps a moderator can combine these two? We have received the gentetic testing results from my husbands brother, who had ALS-like neuromuscular degeneration combined with a family tree with many ALS and...
  5. S

    Genetic testing??

    My husband was dx. In dec. 18 we have very little past family history due to the fact that his maternal grandfather was adopted with no records and his paternal family have all died at young ages ( under 50) except for his father as of now who is 48. Reed is 28 and I am just curious if we...
  6. E

    Genetic testing

    Hello, We are wondering whether to do genetic testing... There have been no more known cases of ALS in our family, apart from my recently diagnosed father. However, a cousin of my dad had MSA and another cousin is now being seen by neurologists with suspected Parkinson's disease. On the other...
  7. Doglady

    Microsoft supported Research - Answer ALS

    Thought this was an interesting article about a research project called "Answer ALS" where PALS can help to collect clinical, genetic, behavioral, molecular and biochemical data on people living with ALS. Using artificial intelligence and machine learning, researchers plan to analyze the data to...
  8. M

    CACNB4 mutation

    Hello everyone. I come back with an update about genetic test. They found CACNB4 gene mutations on my father with CACNB4 variants: NM_001330115,: exon6,: c.G518A,: p.R173Q, Chr2. That's a autosome dominant and I'm 75% able to carry a mutant. I'm currently waiting for my own genetic test results...
  9. E

    My story

    Hello, I want to share with you our story in full. There are bits and pieces all over the forum, but I wanted to gather everything together. My father received a final diagnosis of MND yesterday. My father (60) started experiencing symptoms quite a while ago, around the winter of 2016. He...
  10. Maoko

    How to tell teenagers?

    Hello everyone, I 'm french, my father died of als in 2015, he had done genetic testing but the results went after his death and then nobody told us anything. We all assume that it was sporadic. Then, in 2016 my sister went under a IVF procedure and needed the results, bingo: c9orf72. At this...

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