This week’s Badass Chick is incredibly inspiring. Her name is Jocelyn Duff, she’s a mother-of-two, and the founder of CureCMT4J which was created in order to find a cure for her daughter’s rare disease.
Jocelyn’s daughter Talia was born with Down syndrome and as she got a little older, Jocelyn noticed that Talia was regressing in some of her milestones. Years after being diagnosed with another disease and receiving treatment, Talia wasn’t really getting better…so the Duffs did deeper genetic testing, which concluded that she actually has Charcot Marie Tooth Neuropathy Type 4 J (CMT4J). Jocelyn immediately went to work researching possible cures, and discovered that there weren’t any. But that didn’t stop Jocelyn from moving forward.
First, she started the CureCMT4J Foundation, and then she reached out to the foremost researchers in the field of study. She asked them to meet her in Bethesda, MD to discuss possible gene therapy… and 8 agreed. Upon their suggestion that gene therapy could be the cure for not only her daughter’s disease, but other rare diseases as well, CureCMT4J is now working with a laboratory in New Hampshire, and their goal is begin a clinical trial in 2018. CureCMT4J has raised almost $250k in the year that they’ve been active and this is just the beginning of their journey.
Only 22 people in the world have CMT4J, and I am beyond honored to share Jocelyn’s story: she is working non-stop to find a cure not only for her daughter, but for others suffering from these horrible diseases as well. That’s Badass Chick status if I’ve ever seen it.
Check out CureCMT4J’s web site to learn more about Talia, her family and any upcoming fundraising events.
Loren’s Badass Chick of the Week highlights local women and girls giving back to the community, following their passion and/or breaking stereotypes. If YOU have a Badass Chick you want to see highlighted, email Loren@1033ampradio.com!
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