In the Media: TV
In the Media: Print & Online
- The power of patients and families (WCVB TV – Chronicle)
- Runners Race Closer to a Cure for CMT4J (WHDH)
- How Far Would You Go to Save Your Little Girl? (Boston Magazine)
- Massachusetts Mom Convinces Scientists to Find Potential Cure for Daughter’s Rare Disease: ‘Anything Is Possible’ (People)
- Jocelyn Duff honored by Science Channel (Boston Globe)
- Science Channel’s ‘Science Super Heroes” Initiative Recognizes Jocelyn Duff as June 2017 Honoree (also watch the video)
- Miracles from Maine (Lewiston-Auburn Sun Journal)
- Talia’s Story (WHDH – 7 News)
- How We Make Our Own Hope Amidst an Ultra-Rare Charcot-Marie-Tooth Diagnosis (The Mighty)
- Their child struck by a rare disease, an Ipswich family fights back (Boston Globe)
- Family fights to find cure for daughter’s rare disease (WCVB TV)
- With no time to lose, parents drive CMT4J gene therapy forward (BCH’s Vector Blog)
- Jackson Lab Helping 11-Year-Old With Rare Disease In Search For Cure (Hartford Courant)
- Interiew with Cure CMT4J’s Jocelyn Duff (Rare Disease Report)
- Mom on a Mission: Jocelyn Duff of the Talia Duff Foundation (Macaroni Kid)
- Race for cure continues for Ipswich girl (Ipswich Chronicle)
- A Driving Force: The Duff Family’s Fight for a Cure (Ipswich Neighbors)
- Ipswich family fights time to find cure (Ipswich Chronicle)
- First Day of Vacation Spent Fundraising For Classmate (theLocalNe.ws)
Check out our blog:
This year has been like no other. A “perfect storm” of an unrelenting worldwide pandemic coupled with deep-seated division and unrest here in the U.S. And just as Covid began to spread across our country, Talia’s CMT4J decided to progress further, making it even more...
We are thrilled to announce our collaboration and sponsored research with The Meisler Lab at the University of Michigan!
This is a one-in-a-million community supporting a one-in-a-million cause.
People Magazine has placed a national spotlight on our fight to Cure CMT4J with a wonderful story and a very compelling video capturing Talia’s journey.
I knew pretty early on that I wasn’t destined to be the World’s Greatest Dad. But there are moments in my parenting career that will stick with me forever I think. Not because I particularly shine, but because they strike me as moments when my role as a father and my thinking about parenthood changed.
Is this not our greatest wish for all of our children, and even for ourselves: To have a sense of self so true and bold that we can cry out, “I love myself, World!”
Boston’s Channel 7 News covered Talia’s fight against CMT4J in a story that aired on April 28 … watch it below and be sure to share this page!
[cs_content][cs_section parallax="false" style="margin: 0px;padding: 45px 0px;"][cs_row inner_container="false" marginless_columns="false" style="margin: 0px auto;padding: 0px;"][cs_column fade="false" fade_animation="in" fade_animation_offset="45px"...
We are on target with our pre-clinical work at Jackson Labs in Maine. CureCMT4J funded the creation and production of the viral vector to be used in mice this April/May.
Jakeb’s CMT4J is starting to progress rapidly. His hands ache all the time. Sometimes he has a hard time breathing. Leg braces help, but he still struggles to climb stairs or walk longer distances without tiring.