Kristen Powers ’16 first screened “Twitch: The Documentary” at Parents’ Weekend in 2014. She has now taken it on tour to four different continents and is planning to screen it in Australia in the fall. Her documentary tells the story of the loss of her mother to Huntington’s disease and her decision later on to get genetic testing. She is a leader for the Huntington’s Outreach Project for Education and is deeply involved in promoting awareness for Huntington’s disease.
The Stanford Daily (TSD): In spring of 2014, The Daily interviewed you prior to your first screening at Stanford. What accomplishments have you made since then? Describe the expansions you have made with your project and how it has influenced your personal development.
Kristen Powers (KP): Stanford has kind of defined the development of the documentary, which has really been fun to watch. Freshman year, I was in the editing process, sophomore year I was finishing and starting to screen and junior year I’ve been on a screening tour, which is really cool.
I think it’s kind of like watching a child grow up with “Twitch.” Since finishing the documentary in 2014 and showing it at Parents’ Weekend, I’ve since been able to screen it on four different continents to over 2,500 people and to so many different types of people that include people in genetic counseling programs, medical schools and universities and Huntington’s Disease support groups. It’s been a really amazing experience getting it out there to the world.
As for as how it’s changed me personally, I think just the increased number of connections I’ve been able to make and the opportunity to travel has been phenomenal. I’m actually trying to get to my fifth continent and am fundraising for that right now to get to Australia. I just feel so lucky because I have this seven-continent bucket list and am already on track to go to five. It’s truly been amazing.
TSD: In which countries have you succeeded in doing screenings and how have audiences reacted? Did audiences in different countries have different reactions and how do you believe that influencing a broader audience has contributed to the impact of your film?
KP: Of course I’ve screened in the U.S., and I also screened in Santiago, Chile while I was studying abroad there. That was to a group of high school students that didn’t have a personal connection to Huntington’s disease, but they knew someone who might have it or was at risk. Then I went to Barcelona and screened at the European Huntington’s Disease Network, which was attended by Europeans from all over, even some outside of Europe. Finally, I did a screening while I was studying abroad in Cape Town, South Africa.
The reaction has been very universal, very positive, very receptive and very interesting. In terms of impact, it’s amazing to screen to people who don’t have any connection at all to Huntington’s disease and to see the impact it has on them.
They’ll say, “I never heard of Huntington’s disease before this but now I understand why it’s important to be empathetic towards people with neurological diseases or even mental illness.” They may not try to cure or research Huntington’s disease, but the fact that they’re aware of what it is is what’s important.
People have also appreciated the message of trying to live life as best as you can, regardless of whether or not you are at risk for something and because we don’t know what’s going to kill us. A lot of people have actually honed in on that impact of the film more than I thought.
TSD: In 2014, you described how you would be funding your film through an Indiegogo campaign. How has the funding process gone for you thus far and what was required for you to accomplish your goals for the production of this film?
KP: Indiegogo has been a huge part of “Twitch”‘s development in fundraising. Indiegogo is responsible for funding the filming and the editing as well. It took about $50,000 to fund this film and Indiegogo funded $35,000 of that. It’s been an integral part of the fundraising process.
Since the screening last year, as a result of The Stanford Daily’s article, I received a lot of corporate sponsors from raising awareness about the film. Corporate sponsors but mostly individuals have been really supportive in making sure the film is successful.
TSD: What are some of the most interesting reactions that you received from audience members and how do you believe that your film may be changing the perspectives of others towards genetic testing and Huntington’s Disease?
KP: I think one of the most interesting reactions that comes up is the debates and conversations about genetic testing. I’ll have friends who have never ever considered genetic testing who are sitting there after the film and questioning if they would ever do that. Sometimes there have been debates at these screenings, which is really interesting to watch because I’m a little bit detached from it.
It’s really interesting what types of people say they would never undergo genetic testing because they think it’s unethical. So, there’s a really interesting mix of opinions and it’s interesting to see how it plays out demographically.
I think it’s really important to have those conversations and I’m glad the film is sparking them. It’s important that we talk about it since businesses like 23andMe make it possible for us to sequence parts of our genome, but we don’t necessarily think about the consequences from the economic and emotional standpoint. I think it’s nice that “Twitch” provides this opportunity, where people can think about this for the first time before they undergo those types of processes.
TSD: Recently, you received a nomination and award for Stanford students who have made a considerable impact in the Stanford community in Business Insider magazine. What was your reaction like to this honor and do you believe it contributed in some way to your success?
KP: I was chosen for Business Insider’s top 15 Stanford Students, and it was an absolute surprise. Fall quarter, I received this phone call from someone saying that they were from Business Insider and that they wanted to interview me for something related to Stanford. They didn’t really tell me what but it was a short, informal interview.
A few weeks later, they sent me the article and it was titled “Top 15 Stanford Students” and I was like how did I get on this list? I think it’s a tendency to feel like you’re an imposter at Stanford and believe that you didn’t deserve to be on that list but I was really thankful for it.
It just legitimizes my work and shows that even though Huntington’s disease is a rare disease that people do care about it and can extend empathy to that cause even if it’s just via my story.
Contact Angelique Dakkak at angeldak ‘at’ stanford.edu.