If you knew that you had a 50% chance of inheriting a fatal disease, would you live your life worrying about it? A high school senior, named Kristen Powers has been living with this knowledge for half of her young life. At 18, she’s finally old enough to find out if she has inherited a gene that will make her lose the ability to walk, talk, think, reason and prematurely die like her mother did. Huntington’s Disease robbed Powers’ mother of a full life. In January 2011, Nicola Powers lost her eight-year struggle with the debilitating disease. She was 46.
In May 2012, Powers will undergo a series of tests to find out if she is also facing the same fate. It’s hard to imagine what we’d do if we were put into the same situation as this bright young woman, but Powers is a focused, strong and passionate individual who is taking on Huntington’s Disease with a goal to create a national dialog that will ultimately lead researchers to find a cure for it and possibly other neurological diseases. She’s launching a fundraiser to raise $100,000 to produce and promote the documentary Twitch, which chronicles her journey through testing for HD, the perils of the disease, and the strain the disease puts on families and friends of its victims. “I believe the documentary can effectively educate people about the disease while simultaneously capturing the intense emotional hardships of those of us handed our medical fates a little earlier than most,” said Powers.
The campaign is spotlighted at IndieGoGo.com, an international crowd-funding platform. On January 26, 2012 she is hosting an online event called “$5K in a Day” to mobilize friends, family and supporters to fund the first phase of the documentary. Twitch Documentary Fundraiser
Powers’ mum’s struggle and the knowledge that she may test positive for Huntington’s Disease has created a sense of urgency but has also given her a zest for living her life the fullest and to make a difference. “It’s made me more aware of issues and taught me that I don’t have to wait to create change. The greatest thing about my mom’s disease is that I’ve learned that I can do anything regardless of how old I am,” said Powers. She’s already founded The Green Tigers, a student environmental group, which led to Chapel Hill High School in Chapel Hill, NC to become a Champion of Change and earned Powers a trip to the White House and recognitions from Parade and Family Circle Magazine. Some of her changes at her high school included motion detectors on lights and a community garden.
Kristen Powers is definitely using her passions to make a difference. Way to go, Kristen and Good luck with the fundraiser and the documentary!