The Twitch Story
What would you do if you knew you had a 50% chance of inheriting a fatal brain disorder? What if you were 18 years old and decided to find out NOW if you will develop this disease? What kinds of choices would you make about marriage, children, career, life? Twitch is the first documentary to follow a young person (Kristen Powers, 18) going through genetic testing for Huntington's Disease, a genetic neurological brain disorder that destroys the victim's ability to walk, talk, think and reason, eventually leading to death. Kristen watched her mother lose an eight-year battle with the disease in 2011; she has a 50% chance of inheriting the same fate.
Kristen successfully raised $18,000 earlier this year to film the entire testing process, as well as interviews with local Huntington's disease experts. Now that she has the footage, she has found an AMAZING editor by the name of Eva Brzeski. Kristen is determined to make this documentary the best it can be and that means investing in an editor who she has complete faith in.
When you donate to this documentary fund, you are helping Kristen and her team get one step closer to providing footage and insights on the world of Huntington's disease and genetic testing that will spark a national conversation. By doing this, you are helping to reduce the stigma around the disease, as well as provide resources and support through the medium of film for people similar to Kristen.
You're probably thinking $50k is a TON of money for editing. It's a ton of money in general. However, Kristen has done extensive research with some of the best documentarians in the field (HBO, Odyssey Networks, PBS, etc). Every single one of them has said, "If you invest in ONE thing during this process, you invest in a GREAT editor." Great editors are not cheap and for good reason. They spend hours pouring through stacks of footage to ensure that they capture the essence of the story you are trying to portray. Not to mention that they have to pay for all the hardcore technical equipment, office space, food, a roof over their heads...all that good stuff.
How far will $50,000 get us? $50,000 will get us a completely edited documentary from start to finish. Eva will be able to dedicate the proper amount of time in order to make sure Twitch is a masterpiece that truly reflects the experiences of those devestated by Huntington's and its stigma.
If we do not reach our entire goal this time around, we will use all the funds raised to move along in the editing process. We will then continue to apply for grants and for money from foundations in order to fill in the gap.
Check out our perks too! They're nothing too fancy, but we do want to say thank you for even just that CRUCIAL $1 donation you made to the cause. You are awesome.
A personal message from Kristen Powers:
As a teenager overwhelmed by Huntington’s disease, I failed to find helpful resources and support systems to help me cope with the disease my mum was dying of. When she passed away and I decided to test, I still could not easily find any resources that would aid in my decision-making process.
I set on this journey to make Twitch in order to help build the pool of resources for those affected by Huntington’s disease, especially using the powerful medium of film. No one should have to go through this disease alone, especially as a confused young teenager (we are confused enough with the opposite sex!). There should be videos, educational packets, and networks that all people can access.
The individuals, families, companies, etc. who are funding Twitch are ensuring that there are accurate, well-informed resources and conversations happening all over the world concerning Huntington’s disease. They are making sure no other child grows up confused, scared, and alone, searching the Internet for a community that is not there. They are leading the charge to break down the stigma that makes it so hard for HD families to come out and talk about their disease. Most importantly, they are helping the world understand why Huntington’s disease and genetic testing need to become a part of a national conversation. We, as global citizens, can ensure that my generation is the last generation to know what it means to be gene-positive.
Other Ways You Can Help
Can't donate? Not a problem. We would love it if your friends and families can. And the only way your friends are going to know is if you share this thing! Please blast this out to the Twittersphere, Facebook, e-mail, MySpace (if anyone still uses that...). Seriously though, even just the attention will really make a difference in the lives of people affected by Huntington's. It feels way better when people say "Oh yes, I'm familiar with Huntington's" than when they stare at you with blank looks. Same goes for the assumptions made about the genetic testing process.
Feel free to educate yourself as well using the Huntington's Disease Society of America's website. Check out the resources at www.hdsa.org
You all are the best. By simply taking the time to read this, you are helping create a documentary that is going to change the conversation and build bridges in ways that the Huntington's community has never before experienced. You rock for doing that.
Special thanks to Jeff Raskin for editing the trailer.