Students Launch Tweetstorm to Help Classmate With Rare Disease - NECN
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Students Launch Tweetstorm to Help Classmate With Rare Disease

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    NEWSLETTERS

    Tweetstorm Launched to Help Classmate With Rare Disease

    Ipswich Middle School students are tweeting the hashtags #WeNeedAnAngelDonor and #RUDuffEnough to help Talia Duff, who suffers from CMT4J, a progressive neurological disease that can be similar to ALS.

    (Published Wednesday, Dec. 13, 2017)

    A group of Massachusetts students launched a social media storm to help a classmate find a cure for a very rare fatal disease.

    Students across the North Shore are tweeting the hashtags #WeNeedAnAngelDonor and #RUDuffEnough to help 12-year-old Talia Duff, who suffers from CMT4J, a progressive neurological disease that can be similar to ALS.

    The mission that started at her middle school in Ipswich intensified with a tweetstorm Wednesday, which involves tweeting at a number of high-profile celebrities and Twitter accounts, including Ellen DeGeneres, Jimmy Fallon, and the Today Show.

    Duff's friends at Ipswich Middle School say they are hoping to find more donor to fund research into a cure by sharing her story online.

    Mass. Students Hope Message Goes Viral to Save Friend

    [NECN] Massachusetts Students Hope Message Goes Viral to Save Friend

    Talia Duff has a very rare fatal disease called CMT4J that slowly disables the body over time. The search for a cure needs more funding, which is why her friends at Ipswich Middle School are trying to spread her message. Visit curecmt4j.org to donate.no description

    (Published Wednesday, Dec. 6, 2017)

    This final push on social media is an idea that came out of rival school Hamilton Wenham. 

    "We figured the best way to do this was to get a massive amount of people to tweet about it all at the same time," Hamilton-Wenham student Amy Thissell said.

    Dozens of schools are coming together to tweet for a cure, trying to get the ears of anyone who can help and hoping to make enough noise to save their friend.

    Because of the way the disease progresses, the common cold or flu can be devastating.

    "Because every day that goes by is just another loss of nerve function," said Talia's mother Jocelyn Duff.

    Only 22 people in the world have CMT4J, but Duff's family believes the research can help cure other rare diseases.

     

    Duff's friends and family hope to raise a total of $1 million by the end of December. They've already raised about just over $635,000, according to a website run by Duff's family.

    "She actually gave me a big hug and said, 'It’s going to be okay mom, isn’t it? It’s gonna be okay,'" said Jocelyn. 

    Click here to donate to the cause.

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