I turned 70 last year. My brother (74) died in August from a fall attributed to his ALS (SOD-1) and our mother (79) passed away in 2007 after suffering with ALS for about 3 years. We thought hers was a random case and her parents passed in their early 60s before any possible symptoms appeared. We were told that it is a very low percentage of known patients that pass this on genetically. As yet I have no symptoms but have had basic/baseline neuromuscular tests done after I learned I too have the SOD-1 gene. I am ever hopeful that new drugs and tests continue to be developed for those of us who may still receive an ALS diagnosis. It is important to give this horrible disease more attention to gain more funding for more testing and development of new therapies. I pray that I am spared but am living my life unencumbered by my family history.
I am Robin’s Story
ALS gene carrier
North Carolina