Stanley has traced it back nine generations.
"I lost my brother and my cousin in 2005, my mother and her brother and sister, so three out of four siblings passed away from ALS," Stanley said.
The 47-year-old single mother said it wasn't until she lost her brother and cousin three years ago that she became truly concerned.
"It's very frightening to live with, everyday you wake up, check your fingers, your toes, does everything move, every muscle twitch you have. It's frightening everyday," Stanley said.
The first symptoms of ALS can be loss of function in your hands, but it progresses very quickly. Within months, patients lose all muscle function, yet their minds stay intact.
"It's like being buried in the sand as a kid, trapped in your own body," Stanley said.
Eventually Stanley learned she did not carry the familial gene SODL that could predispose her to ALS, and she's been told that means her young daughter will likely escape the death sentence she fears as well.
But the experience has prompted Stanley to take action in hopes of helping find a cure.
"I think that's why the reason I don't have it, so that I can get out and help to find a cure and raise awareness," Stanley said.
Stanley is now an ambassador for the ALS Therapy Development Institute.
The Cambridge, Massachusetts, nonprofit biotechnology company has 30 full-time Ph.D scientists researching potential treatments for ALS.
"When I walked into that lab in November, I cried. Finally there's hope," Stanley said.
But that hope needs more financial backing. Because ALS afflicts a relatively small number of people in the U.S. -- 35,000 -- significant funding is hard to come by.
Stanley is determined to change that.
She's already spearheading local fundraisers. One is scheduled for September in Orange County.
