Bigfork resident working to get screenings in Montana for rare deadly genetic disease
Steve Shapero and his grandson James Robert Lusby (JR) He lives in Oklahoma and has to go to Stanford Hospital every six months to have a brain MRI until he is 12 years old. Oklahoma added ALD to their Newborn Screening last year. (photo provided)
Bigfork resident Steve Shapero remembers when his brother was diagnosed with X-ALD in the 1980s — a genetic disease that later led to loss in his mobility.
At the time, it was considered improbable to be a carrier if you had no symptoms...
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