IPSWICH — A group of just-graduated 4th graders is spending their first day out of school trying to fund a classmate’s medical needs.
The kids are still working their bake sale this afternoon, June 23, outside Green Elephant on Market Street.
They are are almost halfway toward raising $30,000 for Talia Duff, 10, who suffers from the extremely rare Charcot Marie Tooth 4J disease.
Charcot Marie Tooth is “a very rare disease in and of itself,” said organizer Marcia Gray. A Google search reveals that symptoms include “muscle weakness, decreased muscle size, decreased sensation, hammertoes, and high arches.”
The 4J designation is for an even rarer variation, afflicting only 25 kids in the world, she added.
“She’s an amazing little girl,” Gray said of Duff who just graduated 4th grade. “She’s often called the ‘mayor of Winthrop School’,” she added.
“She is a big reader, a budding musician, actor, tandem cyclist, and sit-skier,” fundraisers say.
The problem Duff faces is that her disease is so rare, no for-profit pharmaceutical company will take on research, Gray said.
The disease has forced the girl from a walker to wheelchair, “robbed her of strength in her arms, and weakened the nerves involved in breathing,” a fundraising leaflet said.
In addition to the bake sale, organizers have set up a You Caring crowdfunding page. They have raised $13,405 so far.
While big pharma isn’t attracted to ultra-rare diseases, the Duff family has found Dr. Jun Li at Vanderbilt University.
The money raised will pay for the first phase in assembling “a team of world-class scientific and clinical experts to accelerate work in gene therapy to cure CMT4J.”