At Ipswich Middle School in Massachusetts, just outside this quaint coastal town, when sixth-grade teachers and students learned about a potential cure for a classmate’s debilitating illness, they did something huge.
Talia Duff, 12, was diagnosed two years ago with a strain of Charcot Marie Tooth disease (named for three researchers who discovered it), a type only about two dozen people suffer from worldwide, losing muscle function and often becoming ill.
“When she was diagnosed with CMT4J, it was devastating” says her mother Jocelyn. “But I couldn’t just watch her fade away. I had to do something.”
Duff, a physician’s assistant, brought together experts, learned about promising gene therapy, and began navigating the complex fundraising, drug trial, and production process. She formed Cure CMT4J, and began raising money and awareness about how this therapy would help people suffering from a variety of related diseases.
That’s when Talia’s classmates stepped in.
Sixth-grade teacher Kathy Simms initially led students and teachers selling cookie dough last fall, but a host of other fundraiser ideas popped up. “The students really care about Talia. Now they could help. They were incredibly excited and fully invested.”
But soon, as a group of teachers sat in Simms’ classroom on a Friday afternoon contemplating the funds needed, a new idea was hatched. “We decided we needed to do something more than sell cookie dough,” Simms says. “We had to reach more people. We needed to go bigger.”
Working over the weekend and through a big, busy text chain, teachers planned a video to bump up donations. They enlisted other staff and a video crew and prepared to have sixth graders produce materials Monday morning and rehearse and film at noon. Teachers teared up as the students at a morning meeting read aloud together from the slides created to guide the message.
“Immediately all our teachers and kids were pitching in to help,” says Simms. “It was amazing how everything came together, and it’s hard to describe the enthusiasm. Everybody contributed.”
The video, filmed December 4 and now viewed nearly 27,000 times, features pairs of students walking into view with dozens of signs telling Talia’s story. It got attention on social media, then in regional news reports, and eventually the ABC Nightly News.
Some $50,000 was raised from student fundraisers, Simms says, but the video helped Cure CMT4J gain some 6,000 supporters and more than $1 million. And Talia’s mom has committed to raising a similar amount this year.
“What we accomplished is unheard of in the world of scientific research,” she says. “But we are in a race against time—for Talia and others.”
To support Talia’s classmates in this effort, visit curecmt4j.org, where you can contribute, learn more about her disease, and see their video.
