NEWBURYPORT — A family raising money to help fund a cure for their daughter’s rare childhood disease will hold a gala event Oct. 20 at Steeple Hall, 26 Green St.
The event, which starts at 7 p.m., is called “Dare to be Rare” and will include food, drinks, auction items and music by Splash!
Jocelyn Duff, the mother of Talia Duff, 11, said her daughter was diagnosed with a rare, progressive neurological disease called Charcot Marie Tooth Type 4, or CMT4J, several years ago.
Medical authorities say it is much like ALS, causing progressive muscle weakness and paralysis.
Talia is in a wheelchair and has lost use of her arms.
“When we received Talia’s diagnosis, we were told there was no treatment or cure,” Duff said. “Only 22 people in the world were known to have CMT4J. It’s a parent’s worst nightmare but we couldn’t just sit back and let our daughter slip away.”
She, her husband, John Duff, and others started a foundation, and are seeking donations to help develop a clinical trial in 2018.
Her foundation, CureCMT4J, is raising money to help with the trial, which involves the National Institutes of Health and The Jackson Laboratory in Maine.
The Duffs, residents of Ipswich, are hoping that gene therapy can produce a breakthrough.
Jocelyn Duff said about $300,000 has been raised. They will need about $1 million by the end of 2017 to facilitate the trial.
“Our gala will be a great night,” she said, “with fine food and drink, live music from the band Splash!, updates from our researchers, and the opportunity to find some truly incredible auction items, as well as artwork from North Shore area artists.”
Duff added, “There will some announcements from researchers, one from Jackson Laboratory in Maine and one from the University of Michigan.”
Tickets are $125 and can be purchased at www.cureCMT4J.org. Donations can be made at the same site. Steeple Hall is above the Mission Oak Grill.