by Kerry Zagarella
The Chase the Butterfly for CureCMT4J road race is a joyous celebration of human kindness and strength, with an abundance of hope cultivated by the acts of two Ipswich High School sophomores and future leaders Sarah Eliot and Talia Duff.
A twelve year old Sarah found inspiration while running with her family in a charity road race while on vacation in Vermont. Why not bring this same sense of community collaboration back to Ipswich and raise funds for her friend Talia?
Once the idea came to Sarah, she knew she had to get to work. Sarah began this journey by creating a slideshow and presenting it to the CureCMT4J Board of Directors. The Board was incredibly impressed and Sarah began organizing. Sarah and friends came up with the race name, “Chase the Butterfly for CureCMT4J”, feeling like it represented Talia’s spirit and love of Butterflies! A butterfly with a double helix at its center is the logo for CureCMT4J-representing change, metamorphosis and hope.
Sarah shares, “This was the first fundraiser I'd really ever been a part of, let alone organized. We went into it blind, and it was definitely a learning experience for everyone.”
The 3 mile fun run/walk road race at Bradley Palmer State Park, in Topsfield, MA is scheduled for Sunday, May 15th at 10:00am. All proceeds from the race will go to support research in the development of treatments for CMT4J, a rare genetic disease similar to ALS.
Now in its third year, with two years off due to Covid, Chase the Butterfly for CureCMT4J will feature music by a favorite local band, Bottles and Cans, as well as food, CureCMT4J items for sale, and a whole lot of community love! This collaborative community effort highlights the power of two strong, young women, Talia Duff and Sarah Eliot.
Talia Duff, a long time friend and classmate of Sarah’s, has CMT4J. Though the march of a rare disease has taken away so many abilities, Talia does not allow the disease to define her. Her resilience and joy are found in her love of her family and friends, school, music, adaptive skiing and dancing and swimming. She loves hanging out with friends and bugging her older sister, Teaghan.
Rare diseases like CMT4J receive little funding or research because their numbers are so few. Parents and patients affected by rare diseases often find themselves driving the research toward a cure. Talia's Mom, Jocelyn, did just that. In 2016, shortly after Talia's diagnosis, she and her husband, John, founded CureCMT4J, a non profit foundation dedicated to advancing treatments for CMT4J. In just eighteen months, CureCMT4J created a scientific team, spearheaded all of the necessary preclinical work toward a gene therapy clinical trial, and raised over $1million.
Jocelyn reports that the foundation's efforts toward a clinical trial have been challenged by the global pandemic, which forced non-Covid research labs to shut in 2020. Since then, supply chain issues, funding, and regulatory hurdles have continued to wreak havoc in the rare disease community. Undaunted, CureCMT4J continues to push forward, creating partnerships toward a first-in-human CMT4J gene therapy clinical trial, as well as developing and funding research in identifying existing drugs and other research pathways that could also help people with CMT4J.
The Duffs have been overwhelmed by the kindness and generosity of Sarah and the multitude of other fundraisers for CureCMT4J. "We never could have done this without the support from our community. It's really kept us going over the years," says Talia's Dad, John.
Jocelyn is quick to point out that Sarah's persistence has not waned over the years, despite the challenges of Covid. "She just keeps coming back, every year, wanting to put on the race again. We haven't been able to do it since 2019, because of Covid, but Sarah was determined to bring it back. She does most of the planning and logistics single-handedly. She's pretty impressive."
Sarah shares that the organizing has gotten easier over the years, “We have established a pretty concrete timeline of when things need to get done. This year especially, I feel like I can be more creative, because the foundation has already been established.”
Sarah credits her community involvement to the influence of her grandmother, Charlotte Eliot. “She has participated in many different community events and always strives to make a difference. Since I was younger, I have always wanted to be as involved as her.”
How can you help? Join Sarah and the Duffs in their relentless push toward a cure.
Register for The Chase the Butterfly for CureCMT4J 3-miler at: chasethebutterfly2022.eventbrite.com
You can run, walk or roll through beautiful Bradley Palmer State Park, enjoying the music of Bottles and Cans, while taking part in a community effort to bring a treatment to Talia and others with CMT4J.
Click here:for race and registration information
Register before May 1st for a free CureCMT4J t-shirt! For more information, visit curecmt4j.org. Sarah and Talia have done all the heavy lifting for you; they are warriors for the cause. Join them and spread the word; register today!
Friends and JOY warriors: Talia Duff and Sarah Eliot