Daniel Gerson, poses for a portrait in Pocono Pines, Pennsylvania. Gerson’s mother died of ALS and had an ALS gene that he and other family member had a 50-50 chance of having. After waiting for months, Gerson learned he does not have the gene, but other family members do.

PHILADELPHIA — Not long after Rickie Samuel learned that she had ALS, a heartbreakingly disabling and fatal neurological disease, she and several members of her family met with her treatment team to hear more horrible news.

Two years ago at Temple University Hospital, Terry Heiman-Patterson told them that Samuel’s illness was caused by an abnormality of the C9orf72 gene. The mistake, which was identified just 10 years ago, causes ALS and a form of dementia that first affects judgment and language skills rather than memory. Scientists believe that almost everyone who carries the mutation will get one of the diseases if they live long enough. Some, like Samuel, get both.

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