Ella Neiderhelman, 11, spent an hour outside in downtown Ipswich on Dec. 20, playing songs on her guitar and flute with a donations jar. She played holiday songs, along with theme music from “Jurassic Park” and “Star Wars” — stopping only when her hands got too cold to play.
Neiderhelman was raising money for Cure CMT4J, a local foundation trying to fund research for a rare disease afflicting Ipswich sixth-grader Talia Duff, a friend and classmate of Neiderhelman’s. Between her hour on the 20th and a shorter session earlier this month, Neiderhelman was able to put $90 toward CureCMT4J’s fund-raising goal of raising $1 million by Dec. 31.
“I wanted to do as much as I could to help,” Neiderhelman said.
Neiderhelman was not the only local resident eager to help. The community has rallied behind her. Cure CMT4J — started by Talia’s parents, Jocelyn and John Duff — has raised $974,000, about $500,000 since Talia’s classmates at Ipswich Middle School stepped up the campaign Dec. 6.
Last week, an anonymous donor carried the foundation over the $1 million mark.
“It’s been extraordinary,” Jocelyn said. “Every time I turn around, I hear about someone else who’s hosting some kind of fund-raiser.”
Talia, 11, has Charcot-Marie-Tooth Neuropathy Type 4J, known as CMT4J. The neurological disease — which affects an estimated 20 people worldwide — is similar to ALS, and causes muscle weakness and respiratory issues. Talia also has Down syndrome.
CureCMT4J has partnered with Dr. Jun Li at Vanderbilt University, who sees a potential cure through gene therapy — introducing healthy copies of faulty genes to the body — and plans on using money raised this year to fund the creation of a treatment to be used in human trials.
Despite national attention spurned by a video made by Ipswich middle schoolers and a tweetstorm organized throughout the North Shore — including spots on David Muir’s ABC World News Tonight and in CNN’s daily “5 things” e-mail newsletter — much of these funds have come from Ipswich and surrounding towns.
Staff at Ipswich’s Choate Bridge Pub pooled tips received on to-go orders and donated $500. Ipswich Hair Crafters held a “cut-a-thon” that raised almost $3,000. The North Shore Performing Arts Center matched donations from dance students’ families, totaling over $1,000. Those are just donations posted to CureCMT4J’s website in the past week.
It’s not just adults donating — local kids have gotten into the fund-raising spirit in a big way. Middle and high school sports teams and clubs in Ipswich, Danvers, Manchester-by-the-Sea, Hamilton, and more have raised thousands.
Jimmy Bornstein, an 11-year-old Ipswich resident and classmate of Talia’s, turned a family tradition into a fund-raiser. The Bornsteins like to spend weekends at Pavilion and Clark beaches in town picking out sea glass. Jimmy and his brothers — Alex, 13, and Sean, 8 — spent nights at the dining room table, putting sea glass and sand from the beaches into little bottles and decorating them with pink ribbon.
“We made a couple of these for family and they really liked it,” Jimmy said.
With the help of their dad, Jon Bornstein, the jars are now for sale at Ipswich gift shop Zenobia’s under the name “Talia Treasures” for $7.50 each, with all sales going toward CureCMT4J. So far, they’ve raised $285.
Pia Stewart, 13, and Olivia and Alana Novello — sisters who are 12 and 8, respectively — have raised $900 selling custom-made pillowcases.
“I’ve been sewing, like, my entire life,” Olivia said.
Olivia and Alana’s grandmother, Christine Whiteman, taught the girls to sew the pillowcases with a french seam, meaning there’s no ruffled edge on the inside of the pillowcase. They sold them for $10 each on a weekend in mid-December outside Henry Bear’s Park, a toy shop in Ipswich. Stewart said it was cold out, but made better by hot chocolate and the fact that they were helping.
“I’ve known Talia for a long time, and as soon as I knew she needed help, I just had to jump to action,” Stewart said. “She’s my friend, and I wanted to help her any way that I could.”
Jocelyn Duff said Talia and the rest of the family have missed the fanfare of the recent donation push. On Dec. 20, the Duffs checked Talia into Boston Children’s Hospital after she went into respiratory distress after coming down with the flu, where she was treated for three days.
“It just shows that when [those with CMT4J] meet the common cold or the flu, it can be very deadly,” Jocelyn said.
Luckily, Talia made it home for Christmas to see that Santa had brought her favorite present, which she asks for every year: Small bags of potato chips placed all around the Christmas tree.
Those interested in donating can do so at donate.curecmt4j.org.Laura Elyse King can be reached at email@example.com. Follow her on Twitter @lauraelyseking.