| 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 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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