Ethan Schachter was born with a rare genetic disease. Now his mom is raising over $1 million to find a cure

Nemaline myopathy type 2 disproportionately affects Ashkenazi Jews—but young couples aren't typically screened for it when trying to get pregnant.
Ethan Schachter was born with nemaline myopathy type 2, a rare genetic disease that Ashkenazi Jews are at a disproportionately high risk of having. (Supplied photo)

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 automatically screened for it in Canada, where Ethan is one of maybe four or five kids who live with the condition.

Ethan’s mother, Toba Cooper, wants to change things. She recently launched a crowdfunding campaign to raise more than a million dollars to help researchers develop a made-in-Canada treatment for her son’s condition. And she hopes to raise awareness so the condition could be added to the list of eligible tests. Cooper joins The CJN Daily today along with Jim Dowling, a doctor at SickKids Hospital in Toronto, who is one of the world’s foremost experts on this rare disease.

What we talked about:

Credits

The CJN Daily is written and hosted by Ellin Bessner (@ebessner on Twitter). Zachary Kauffman is the producer. Michael Fraiman is the executive producer. Our theme music is by Dov Beck-Levine. Our title sponsor is Metropia. We’re a member of The CJN Podcast Network. To learn how to support the show by subscribing to this podcast, please watch this video.

Author

Support Our Mission: Make a Difference!

The Canadian Jewish News is now a Registered Journalism Organization (RJO) as defined by the Canada Revenue Agency. To help support the valuable work we’re doing, we’re asking for individual monthly donations of at least $10. In exchange, you’ll receive tax receipts, a thank-you gift of our quarterly magazine delivered to your door, and our gratitude for helping continue our mission. If you have any questions about the donating process, please write to [email protected].

Support the Media that Speaks to You

Jewish Canadians deserve more than social media rumours, adversarial action alerts, and reporting with biases that are often undisclosed. The Canadian Jewish News proudly offers independent national coverage on issues that impact our audience each day, as a conduit for conversations that bridge generations. 

It’s an outlet you can count on—but we’re also counting on you.

Please support Jewish journalism that’s creative, innovative, and dedicated to breaking new ground to serve your community, while building on media traditions of the past 65 years. As a Registered Journalism Organization, contributions of any size are eligible for a charitable tax receipt.