Cure CMT4J, a nonprofit foundation started by a family whose daughter was diagnosed with Charcot Marie Tooth Type 4, or CMT4J, several years ago, is holding a fundraising gala in Newburyport, Massachusetts, this month to help advance a clinical trial.
“When we received Talia’s diagnosis, we were told there was no treatment or cure,” Jocelyn Duff, the mother of Talia Duff, said in a Daily News article written by Dyke Hendrickson. “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.”
Taila Duff, now 11 years old, is already in a wheelchair and has lost use of her arms.
The fundraiser, called “Dare to be Rare” will take place at 7 p.m. on October 20, 2017, at Steeple Hall, 26 Green St., in Newburyport. The event will include food, drinks, auction items, and music by Splash!, a New England band that offers a repertoire that includes Motown, R&B, Top 40, Soul, 90’s, Hip-Hop, Rock, Country and Jazz, to appeal different demographics.
Duff, her husband, John Duff, and others started the foundation after their daughter was diagnosed with the disease and are currently seeking donations to help advance a clinical trial in 2018. The trial will be led by the National Institutes of Health and The Jackson Laboratory in Maine .
The Duffs are hoping that gene therapy can lead to a breakthrough in their daughter’s treatment.
So far, the foundation has raised a little more than $300,000, but it needs a total of $1 million by the end of 2017 to help facilitate the trial.
“Our gala will be a great night, 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,” Jocelyn Duff said. “There will some announcements from researchers, one from Jackson Laboratory in Maine and one from the University of Michigan.”
The Duffs are also offering different sponsorship opportunities, from donations of $50,000 (presenting sponsor), which include your company name exclusively listed on an invitation, 15 event tickets, recognition on the Cure CMT4J website, and promotion on Cure CMT4J social media channels, among other perks; to $1,000 donations (copper sponsor), which include four event tickets and recognition on the Cure CTM4J website.