In 2015, 12-year-old Talia Duff, a sixth-grade student at Ipswich Middle School who has Down Syndrome, was diagnosed with Charcot Marie Tooth Disease, Type 4J (CMT4J). CMT4J, similar to ALS in its ability to weaken muscle function, is a rare disease (there are only 22 people in the world who have been diagnosed) and one that there is currently no known cure for. But strong-willed Talia, along with her parents Jocelyn and John Duff, refused to give up. According to curecmt4j.org, the Duff family visited Vanderbilt University and met with Dr. Jun Li, who informed the family that there is a possible cure but that it would take eight to 10 years to get there. With time not on their side, the Duffs pressed Dr. Li on how to get to a cure faster and he introduced them to parent advocates, parents who take on “the science, funding, and push for an expedited path to a cure for their child.”
And so, in June 2016, the Duff family followed in the footsteps of parents who take their children’s health into their own hands and co-founded CureCMT4J/Talia Duff Foundation, “an all-volunteer non-profit organization dedicated to developing a treatment or cure for CMT4J.” By October, the organization had already hosted a symposium, leading to the development of a world-class scientific investigative team led by Dr. Li. Funded by a Precision Genetics Grant from the National Institute of Health, preclinical work is well under way at Jackson Laboratories, with 11 families having reached out to the organization, also desperate for some hope.
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Students preparing the jars of cookie mix.
Currently, CureCMT4J has an immediate funding need of $1 million by the end of 2017 to “take the science that researchers already have and approach the Food and Drug Administration in hopes of a [human] clinical trial,” according to local news reports. Realizing the severity of the situation and wanting to help their classmate and friend, the students at Ipswich Middle School rallied together to help raise money toward the fund. First, math and science students, organized by Ipswich Middle School math teacher Kathy Simms, as part of an annual equations project, filled 300 jars with cookie mix, sold them for $12 each, and donated the money to CureCMT4J. The students raised over $5,500 but they wanted to go bigger; they wanted to do even more.
On December 5, the teachers and students of Ipswich Middle School created and released a video sharing Talia’s story, which has been shared many times via social media, sparking a tweetstorm launched by the students at Hamilton-Wenham High School and retweeted by everyone from the New England Patriots to Jimmy Kimmel and David Muir of ABC World News Tonight. Students at Danvers and Ipswich high schools also participated in the tweetstorm, using the hashtags #RUDuffEnough and #WeNeedAnAngelDonor.
“It definitely created a lot of awareness for CureCMT4J, and perhaps we’ve piqued the interest of an Angel Donor out there,” says Joceyln Duff.
“We were totally surprised by the creation of the video and response that it’s generated,” says Jocelyn Duff. “And certainly, since then we have been astounded by the response that we’ve received in sharing their efforts—their beautiful video. Over the past week these sixth graders have raised nearly $200,000 through 2,300 donors, in every state, plus Puerto Rico, and four other countries! It has just been incredible. And now, we’re receiving videos of other middle schools or grades or classrooms who are stepping up and sharing their own version of our #RUDuffEnough campaign! This has been all over the North Shore and beyond—to Somerville, Holliston and Masconomet Regional Middle School! Today we received checks from schools holding their own fundraising events in Lexington, MA, South Carolina, Oregon, and Virginia!”
Student making posters for the video.
“In this season of hope, Ipswich Middle School, the entire Ipswich community, and angels beyond have renewed our faith that pure love transcends all limitations,” says Simms, summing up the last two weeks.
David Fabrizio, principal at Ipswich Middle School adds, “I could not be more proud of our students, staff, and community. The #RUDuffEnough movement is another example of the inclusive mindset we have here in the Ipswich schools. Through this experience our students have not only reached out to help a family in need, they have learned lessons in empathy, collaboration, perseverance and the positive power of social media. Talia is an inspiration to all of us, especially her classmates, who she has grown up with. The work our students have done is amazing but it is not done yet; we will continue to support Talia and the CMT4J Foundation. “
CureCMT4J/Talia Duff Foundation currently has 3,654 supporters and has reached 69 percent of its $1 million goal, due in large part to the efforts made by Ipswich students and community members, and other neighboring communities. At press time, the non-profit organization is at $693,293 but it needs your help! Please spread the word by using your own social media outlets to post and tweet—every little bit counts.
“We are so hopeful that we will reach our $1 million goal by the end of the year, says Jocelyn Duff. “We have more hope now than ever before. Our message is spreading far and fast.” Jocelyn adds, “We are continuing to promote the sixth graders’ video and spread the word about our endeavor. At the same time, we are working on our end of year major donor campaign and hope to share the sense of urgency that we have in raising these funds before the end of the year. We have the science, but need the funding in order to move forward toward a clinical trial for Talia and others with CMT4J. Our approach to treatment/cure for CMT4J can be translated to thousands of other rare diseases that also involve a gene defect.”
To donate, please visit donate.curecmt4j.org. To donate by check, make payable to Cure CMT4J and mail to: Cure CMT4J, PO Box 588, Ipswich MA 01938 USA.
Additionally, to help raise funds, you can participate in one of these upcoming local events:
Pomodori Night for Talia
December 20, 4 p.m.-9 p.m.
Take a night off from cooking for a great cause! Pomodori Restaurant will give 50 percent off all take out, dine in, or delivery orders.
Pomodori, 146 High St., Ipswich
Cut a thon benefit for Talia
December 21, 5 p.m.-8 p.m.
A $20 donation will get you a Christmas haircut and help raise money for a truly remarkable little girl. All proceeds will go to CureCMT4J.
Hair Crafters, 26 Central St., Ipswich
Three Sheets CureCMT4J/Talia Duff Benefit Concert
January 20, 7 p.m.-9 p.m.
Come and join Three Sheets to the Wind in supporting this very worthy cause, or donate if you cannot make the event.
The First Universalist Church of Essex, 59 Main St., Essex