| Short Bio |
My family carries the c9orf72 gene variant. My paternal grandfather and father had ALS-FTD. Other family members had one or both of the diseases. I inherited the c9 variant. At 53 (as of June 1, 2023), I am asymptomatic. I am participating in two longitudinal studies at Mass General Hospital, one at the Healey Center and AMG Center for ALS Â and the other at the Frontotemporal Disorders Unit.
God bless all affected by ALS, whether a patient, family member, caregiver, neurologist, researcher or someone with some other involvement.
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| How long have you or the person that you are caring for had ALS? |
Father passed in 2004 with ALS-FTD, about 5 years for FTD and 2 for ALS. I have the c9 gene variant.
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