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Podcast: North Star with Ellin Bessner
Episode: Ethan Schachter was born with a rare genetic disease. Now his mom is raising $1 million to find a cure
Description: Ethan Schachter was born with a rare genetic disease, nemaline myopathy type 2—a type of muscular dystrophy—that disproportionately affects Ashkenazi Jews. It's not always fatal, but Ethan, at 20 months, needs round-the-clock care, including a machine to help him breathe and a tube for nutrition. He can't walk or talk because his muscles are too weak. Currently, there is no cure.
Doctors have only known about this form of the disease for about 15 years. And it's so rare—only one in 47,000 people have it—that couples trying to conceive aren't even screened for it in Canada, where Ethan is...