On the first day of summer vacation, in 2016, a group of 10 and 11 year-old girls gathered together, downtown, in front of what was then The Green Elephant toy store. They were selling baked goods for a cause that was far more serious than their exuberant faces belied. “Please save our friend, Talia” their signs read.
Talia is our now 12 year-old daughter. You may have heard about her. She is battling an ultra-rare disease called CMT4J. It can look a lot like ALS. There is no treatment or cure. She can no longer walk or use her arms. She now struggles to breathe. We are racing against time to fund a gene therapy trial to save her and others.
When we started our foundation, CureCMT4J, in June of 2016, we could not have imagined the incredible love and support that we have received from our community–though we should have suspected it on that first day of summer vacation.
You have offered it up in so many ways: bake sales, lemonade stands, sunrise yoga, concerts, mead tastings, baseball derbies, tip jars, treasure bottles, tweet storms, t-shirt sales, jewelry sales, pillow cases, purple streaks, haircuts, busking, hot cocoa stands, shoelaces, road races, donations from area restaurants…Booster Club and Ipswich high school athletes and their coaches raising money and raising their voices through #RUDuffEnough campaigns in basketball, soccer, volleyball, baseball, lacrosse, field hockey, tennis and football games! You all stepped forward to say “I want to help.”
On more than one occasion an Ipswich police officer knocked on our door to hand off a check from yet another one of their fundraising events. Neighborhood kids raced after us on our bikes to deliver an envelope of money from their latest effort or event. Fundraisers were planned and executed before we were even aware they were occurring.
And most recently, a beautiful video created by Talia’s classmates and teachers sparked a movement of kindness and generosity that spread throughout the world. Donations came in from every state in the U.S. and Puerto Rico. People in Australia, Canada, Great Britain, Italy, Mexico and Russia decided they were #DuffEnough to support and champion our cause.
In just three weeks that beautiful video inspired over 4,300 people to donate to CureCMT4J, raising over $500,000, bringing national media attention to our cause, and ultimately putting us over our $1 million goal for the year. What an extraordinary thing to do for a friend—for a student–for our daughter. Thank you, sixth graders, for loving your friend, for speaking out, and for believing in the power of your voices. Thank you to Talia’s altruistic sixth-grade teachers for hatching the idea to make the video and then for spending countless hours working to get it in front of thousands of people across the world. Kathy Simms, Rochelle Rubino, Jennifer Couto, Kim Chalifour, Alan LaRoche, Samantha Colby, Christine Senechal, Kevin Murphy, Deb Davidson, Karla Sciuto, Amy Whynott, Amy Smith, Karin Crosbie, Jen Reed, Sue Markos, Lori Wirvin, Ashley Morris, Brian Landry, and countless other middle school educators—thank you for your kindness. Thank you to Dave Fabrizio, Kathy McMahon, Dave Dalton, and Jeff Carovillano for your support and patience in hosting the multitude of media appearances.
Many thanks go out to Diane Schoonover and ICAM for countless hours of editing and fine-tuning the video.
Thank you to Deb Clapp and Laura Wheeler for sharing our fight with Hamilton-Wenham high school. Thank you to other surrounding school districts who joined in on the #RUDuffEnough campaign and fundraising efforts—Manchester-Essex Regional Schools, Masconomet Regional Schools, Georgetown, Danvers, Swampscott, Lynn, and Somerville. Thank you to those students who felt so moved to help out a neighbor in need.
We have so many businesses to thank–it is impossible to do so without leaving someone out. Stay tuned to updates on social media and on our website, curecmt4j.org, acknowledging your amazing contributions. We’re desperately trying to keep up with thank you notes! Please know, we are SO grateful for your support.
Thank you to our unstoppable CureCMT4J Team! You have given so much of your time, your expertise, your passion, and your love for our family. We could not have done this without you: Marcia Gray, Jeff Jones, Michele Wertz, Frank Hertz, Toni Mooradd, Heather Pillis, Gretchen Marinopolous, Katie Hertz, Katie Norris, Leigh Stewart, Rob Donahue, Shane Murray, Bill Gorman, and Sarah Player.
Our journey is far from over. We will likely need to raise another $1-2 million in 2018, in order to reach a clinical trial for Talia and others with CMT4J. The awareness you have generated for our foundation has created new relationships with potential major donors and partnering organizations. Perhaps we will find an “Angel”. Perhaps we will continue to find thousands of “Angels”.
Thank you for being our “Angel”. It is overwhelming to feel so lifted up by an entire community. It leaves us sometimes speechless and sometimes tearful. We recognize that this is a one-in-a-million community supporting a one-in-a-million cause.
Jocelyn, John, Teaghan and Talia
“Blessed is the influence of one true, loving human soul on another”. –George Eliot