Not open for further replies.


New member
Oct 4, 2017
Loved one DX
Saint Louis
My 55 yo husband has had neurological symptoms for a couple of years and was just told by a neurologist that ALS is "the front runner" in terms of his diagnosis. His grandmother died 30 years ago at 82 of what they were told was something "ALS-like". She was diagnosed in her late 70s. The generation in between (husband's mother) died of emphysema at 77 (heavy smoker). Of his mother's other siblings, one is still going at 90 and another died of unrelated causes. No other known cases in the family. From what I've read, it would be unusual for a fALS gene to skip a generation but not impossible due to penetrance variables, is that correct? I'm also gathering that it would also be unusual (but not impossible) for fALS to present in one person at 80 and another at 55? Has anyone had this happen in their family? His family is mostly of European (Italian) ancestry. We have three young children. Thanks to all of you who share information in this forum--it's a scary topic but this is a great resource.
Hi. Hoping of course this turns out to be something else!

You are correct that genetic defects in ALS can be less than fully penetrant which would allow it to skip a generation although the major FALS players are highly penetrant.

There is also something called genetic anticipation where successive generations are affected younger. The apparent gap in your family would be about 23 years which is longer than usual for 2 generations but not impossible. Consider also the grandmother might have been symptomatic for longer than you know. I recently discovered one of my ancestors had symptoms 10 years younger than we had believed when I found some old family papers.

C9orf72 which is the commonest form of FALS in PALS of European ancestry can have onset in the age range you are looking at.

As far as children if it does turn out to be FALS there will be genetic treatment/ prevention and or cure for them I am sure. Gene blocking therapy is being worked on now
Last edited:
My husband has a SOD1 mutation, his gene is of incomplete penetrance which means some people in his family might carry the gene and it doesn't manifest to ALS. So far we haven't found one member of his family, dating back 3 generations which showed symptoms.
Our family has 4 people who have died from MND and 2 possible FTD. 1st one died in 1944 at age 49 ( my great aunt), 2nd one died in 1963 at 70 (my grandfather) 3rd one died in 1983 at 48 (my father) 4th one died in 1985 at 63 ( my half uncle). We only knew about my grandfather and my father for a long time. My grandfather was English but moved to New Zealand, which is where my father was born and where I live.
Recently we found another possible death from MND, a death certificate from 1856 from paralysis he is my great, great, grea
Grandfather. At the moment it looks like MND missed a generation but we can’t be sure because of early deaths and still more death certificates to get.
My sister and I have tested positive for the C9orf72 gene. Our children are at risk now like we were before testing.
All I can say is thank goodness for Strong family support.
Last edited:
Not open for further replies.