IPSWICH, MA (WHDH) - Rival high school soccer teams put aside their differences in order to raise money for 11-year-old Talia Duff.
Talia is battling CMT4J – a disease so rare that her parents are essentially creating the treatment.
They have spent the last year raising money and recruiting scientists to hopefully pitch a gene therapy trial to the FDA.
“CMT4J is a very rare disease; there are about 22 cases known throughout the world,” said Talia’s mother, Jocelyn Duff. “These rare diseases have little funding, so its not uncommon for people like us as parents to be driving the science.”
While Talia’s parents believe they found a therapy for CMT4J, the road to approval is long and winding.
Money, federal approving, and time all stand in the way as Talia tries to fight through this disease.
“CMT4J is a progressive disease; it’s similar to ALS. People who have CMT4J, they lose function; they lose muscle funtion; they get very weak in their limbs; they lose the ability to walk; they lose the ability to use their arms,” Jocelyn Duff explained.
However, through it all, the Duff family said it is the community that has kept them strong.
“We’re incredibly appreciative of all the support we’ve gotten so far, it’s an amazing thing,” said Talia’s father, John Duff.
Ipswich and surrounding communities have raised more than $300,000 towards a cure for CMt4J. The year end goal is $1 million.
Those looking to donate can do so here.
(Copyright (c) 2018 Sunbeam Television. All Rights Reserved. This material may not be published, broadcast, rewritten, or redistributed.)