scorecardresearch

They wanted to help. So they started a tweetstorm

Talia Duff with her classmates at Ipswich Middle School.
Talia Duff with her classmates at Ipswich Middle School. (Samantha Colby)

From the intercom on Wednesday afternoon at Hamilton-Wenham Regional High School, students were instructed to pause their classwork, take out their phones, and draft a Tweet. A countdown began, leading up to 1:29 p.m., when everyone was told to hit send.

The students were tweeting celebrities — most commonly Ellen DeGeneres and Jimmy Kimmel — asking them to help find a cure for Talia Duff, a 12-year-old girl from Ipswich with a rare disease. Schools in the area — including Hamilton-Wenham, Ipswich, and Danvers high schools — participated in the tweetstorm, using the hashtags #WeNeedAnAngelDonor and #RUDuffEnough, and linking to a video made by Ipswich Middle School sixth-grade classmates that tells Talia’s story.

Advertisement



Since the video was released on Dec. 5, there have been over 23,000 donations totaling $187,000, according to Talia’s mother, Jocelyn Duff.

“All of a sudden, these retweets and likes and posts from other area businesses started showing up,” said Hamilton-Wenham senior Amy Thissell, 18. “It was really amazing to see all of a sudden, people were helping sending out this message, getting it to go viral.”

Talia has Down syndrome, and has dealt with health issues throughout her life. In 2015, Talia was diagnosed with a severe and extremely rare type of Charcot-Marie-Tooth Neuropathy Type 4J, known as CMT4J. This neurological disease is similar to ALS, and causes muscle weakness, joint deformities, and respiratory issues.

The diagnosis came with bleak news for Talia and her family. There is currently no treatment or cure for CMT4J, with an estimated 20 people diagnosed with it worldwide, and not much research for a cure.

But Talia’s family — father John, dean of enrollment services at North Shore Community College; mother Jocelyn, a physician’s assistant; and 14-year-old sister Teaghan — refused to let it end there.

Advertisement



“We went online and started doing whatever research we could,” John said. The Duffs started the Talia Duff Foundation, now called Cure CMT4J, to raise money for a cure. They’ve partnered with Dr. Jun Li at Vanderbilt University, who envisions gene therapy — introducing healthy copies of faulty genes to the body — as a potential solution. In trials on mice, the treatment has stopped the progression of a disease, and even reversed some of the damage.

Cure CMT4J needs to meet a $1 million fund-raising goal by the end of 2017 so the next step can be taken in creating the treatment. The foundation will ask the Food and Drug Administration to approve human trials in 2018.

As of Wednesday, Cure CMT4J has raised just over 60 percent of its goal. There’s been success in spreading the word, but it’s also because Talia, who loves singing and recently starred as Tinkerbell in a school production of “Peter Pan,” is just so likeable.

“Everyone knows Talia,” said Kathleen Simms, a sixth-grade math teacher in Ipswich. She said Talia is known as funny and bold. On a recent field trip, Talia assigned everyone in her group nicknames. Last week, she sang “Let It Go,” the Frozen anthem, in front of her class.

Funds raised during local school spirit weeks, food sales at sports games, restaurant donation nights, and more have gone to Cure CMT4J this year. Simms even transformed an annual math and science project she does with her students into a fund-raiser. The students use equations to put together a business plan for gift-ready jars of holiday cookie dough ingredients, which they filled and decorated with special Cure CMT4J ribbons.

Advertisement



Simms said they made 300 jars, and people snatched them up. They’ve raised over $5,500 so far, and middle schoolers are volunteering to make a second batch. But Simms and other Ipswich teachers felt that they could do more.

“We thought, ‘That is such a small amount compared to what we need to get to,’” Simms said.

On Dec. 4, they rounded up the sixth-graders, gave them signs explaining Talia’s story, and filmed a video in the school gym.

Simms said Talia’s classmates were excited about the project, but took it extremely seriously.

“That video — we did it in just one take,” Simms said.

News of the video reached Laura Wheeler, a business teacher at Hamilton-Wenham and a resident of Ipswich. She and her marketing class brainstormed this week how they could garner attention for the video and for Cure CMT4J. They came up with the tweetstorm — a planned tweet sent at the same time from everyone they could convince to do so, targeted at people with an audience.

Wheeler said that in the course of four hours on Wednesday afternoon, 12,000 tweets had been sent with the hashtag #RUDuffEnough. The New England Patriots tweeted a link to the video Wednesday evening, challenging #PatriotsNation to donate to the cause.

Advertisement



David Muir featured the story on ABC World News Tonight using the hashtag #AmericaStrong.

Wheeler said the invention of social media and crowd-funding is a game-changer for those with rare diseases and their families.

“People are able to take things into their own hands in a way they couldn’t do before,” Wheeler said. “There’s hope for people who didn’t have hope before.”


Laura Elyse King can be reached at laura.king@globe.com. Follow her on Twitter @lauraelyseking.