Kristen Powers, 18, produces film on being tested for Huntington’s disease
Eighteen-year-old Kristen Powers says she has a plan to eradicate Huntington’s disease.
Her solution is simple — if everyone were to get tested, the debilitating disease could be wiped out in a generation.
Powers, a senior at Chapel Hill High School, is no stranger to the horrible effects of Huntington’s disease, a neurological disease that attacks the brain, eventually destroying all motor functions.
Her mother, Nikki, was diagnosed with Huntington’s in 2003 when Powers was only 9 years old, and she died in 2011.
And Powers said she has a 50 percent chance of dying young from the disease.
To spread awareness for testing, Powers is producing “Twitch: A Documentary,” which will chronicle her journey as she undergoes medical testing for the disease.
“I am doing this in memory of my mum because she passed away last year,” Powers said. “It’s for my family.”
She began raising money for the documentary a few months ago by creating a website through Indiegogo, an online fundraising platform.
Powers set an initial goal of $10,000, which she planned to raise by promoting a trailer on social media to encourage donations. Within eight days, she had raised $5,000.
She then promoted an event called 5K in a Day to raise $5,000 in one day. She raised $5,180 in 24 hours, reaching her $10,000 goal in nine days.
Powers has gone on to raise a total of $14,580 to fund the documentary.
Melanie Raskin, a local writer, producer and director, agreed to produce the documentary.
“I became involved not only because of my TV experience — over 30 years — but also because of the way we clicked,” she said. “We shot Kristen at her school on Tuesday and got footage with her class, with her friends and with her teacher.
“Her friends describe Kristen as an amazing, articulate and goofy person,” Raskin said.
Raskin said shooting will take place over the course of three weeks and will show Powers at home on her family farm and at UNC Hospitals, where she will be tested for Huntington’s and receive the results.
She anticipates the documentary will be released in 2014.
Powers’ close friend from high school, Maya Handa, said she feels the documentary will be a source of inspiration to many.
“It’s the first of its kind,” she said. “It really takes a strong person like Powers to face adversity by trying to help others in her situation.”
Raskin said she wants to emphasize Powers’ bravery in the documentary.
“This is a powerful story,” she said. “This is an 18-year-old who is going through testing for a horrible disease that destroys the victim’s ability to walk and talk and think.
“Would you want to know if you have it?”
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