Facing Her Own Mortality, Teenager Films Her Ordeal for Documentary
Kristin Powers would like her generation to be the last to face the prospect of Huntington’s Disease, a deadly disease that robs middle-aged adults of their ability to function normally before taking their lives. Kristin’s mother died from the disease and Kristin has a 50 percent chance of inheriting it.
Kristin has made a documentary film called Twitch about her experience. She is crowdfunding to help with the distribution of the film. Read our interview below.
What is the social benefit you hope to achieve with or through your crowdfunding campaign?
Twitch is a documentary film that follows 18-year-old Kristen Powers as she undergoes genetic testing for an incurable brain disorder that led to the death of her mother. Even though the film is in the nascent stage of its international tour, it has had profound impacts on medical students, Huntington’s disease families, and the general public. The aim of this documentary is to spark conversation about the implications of genetic testing, as well as remove the stigma surrounding neurological disorders such as Huntington’s disease.
How much money are you hoping to raise and why? How much have you raised so far?
The Twitch Team needs $10,000 to reach all the locations where we have been requested. Since Huntington’s disease communities are often small and underrepresented, we try our best to reach any community that requests us. So far, this has included places like Germany and Australia. However, even local screenings in the United States costs anywhere from $100 to $200 a pop. We will use the $10,000 to pay for transportation, lodging, venue rental, equipment rental, and educational print-outs. All tax-deductible donations can be made to our fiscal sponsor, La Filmforum.
Whom are you trying to help with your project and why?
Genetic testing is increasingly becoming more relevant to any individual with access to a genetic testing clinic. It is important that the general public discusses the consequences of knowing one’s medical fate, including medical professionals. As of now, Twitch has focused on genetic counseling programs as genetic counselors can have a profound impact on the life of an individual undergoing the testing process.
Additionally, this film aims to reaffirm that the Huntington’s disease community is not alone. Our film has raised a tremendous amount of attention to the cause and has provided enormous amounts of hope to the HD community, which is often underserved and ignored by many medical communities and films.
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