i am30 + on my c-9 test in 2021.my father died of als at 50.My mothers sister died of als at 43.Two sisters died of als,(45 and 53 ).lost sister to ftd at 60.and a sister was lost to bulbar als at 70.and my brother has FTD late stages at 72.And last of al my parents had a research paper on the family tree back on 1975 by a dr. milton alter.

I tested above 30 on my c-9 test.I have lost 2 sister’s to als,1 to ftd,1 to bulbar,and I have a brother now with ftd.My father had als and my mother’s sister had als.In1975 a research paper was written on my family tree.There were 16 known from past generations. At the moment I am in 2 research programs.

have you heard about ALLALS it is newer research at 32 different spots checking for early symptoms as a way of better outcome.They like common illness like c-9 in you family.It is to last for 2 to 3 years

I have a defective c-9 gene,high risk.I have lost 2 sisters to als,1 to bulbar als,1 to FTD,and i am losing a brother to FTD.I am in a study at Colombia for als and mayo up in MN. for a check on the FTD issue

i too tested pos. for the c-9 gene lost father 1969 from als,my younger sister age 45 als,sister two years older to als ,sister #3 was lost to FTD age 60,sister #4 was lost to bulbar als age 70,and i have a brother in memory care last year at age 70.I think it maybe FTD again.been out to Columbia 3x in 3 years .the last time i was 1 of 30…

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C-9 positive been to COLUMBIA 3 times last time they put me on glucose monitor and was checking for insulin resistances they want to know why I am ok