About the Documentary

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Twitch follows 18-year-old Kristen Powers as she undergoes genetic testing for the disease that killed her mother. Huntington’s Disease (HD), a neurodegenerative brain disorder, destroys an individual’s ability to walk, talk, think, and reason, eventually leading to death.  The film will chronicle the emotional, social and medical journey through this important test, as well as the impact it has on an individual’s future. Twitch will explore the science with major Huntington’s Disease experts and activists who will provide deeper insight into the complexities and hopes buried in the disease.  Huntington’s has great stigma surrounding it; solving its mystery could potentially lead to the cures of not only HD but also several other neurological illnesses such as Parkinson’s, Alzheimers and ALS. This documentary will highlight the pressures people, especially young adults, face when given the chance to be handed their medical fate.

 

About Kristen Powers

Kristen Powers’ struggles with Huntington’s Disease began in 2003 when her mother was diagnosed with the illness. As a precocious nine-year old, she decided that she would not let this disease conquer her life. Despite the fact that she knew she had a 50% chance of inheriting the same fate as her mum, Kristen decided to start improving the world around her from that very moment. This led her to create the Chapel Hill High School Green Tiger Campaign and Garden which has received national recognition from Parade Magazine, Family Circle Magazine, the White House, Vice-President Joe Biden, and Secretary of Education Arne Duncan. It has even become the end of a few of Stephen Colbert’s jokes. Now that Kristen has finally turned 18, the legal testing age, she has decided to use her experience to chronicle the struggles of living with a fatal disease (her mum finally succumbed in January 2011), especially knowing that she may one day become the victim. Twitch is her first documentary, but she has big plans for it. Kristen hopes that the momentum from this film will lead to a national conversation about genetic testing and the search for a cure for various genetic diseases.

24 thoughts on “About the Documentary

  1. Kristen

    You are an amazing young woman and your mum would be so proud. Please know that the girls and I are behind you 100%. Please keep us informed as to your progress.

    Lori

  2. Kristen you are doing amazing things to educate people about Huntingtons.Through education comes awareness and then donations. We need a national voice. Would you have any thoughts on that!
    George Essig
    President, San Diego Board
    Huntingtons Disease Association

  3. I thing your doing great by wanting to tell your story, it’s inspirational…. remember that no matter how much you share, you can take a break sometimes.. its easy to share and its great im greatly encouraging you, just remember that your not obligated to share what you dont want to, what you feel should be just yours…. i have alot of those moments

  4. I’m living “at-risk” for Huntington’s. This inspires me. I love getting the word out and that is exactly what you are doing! You are in my thoughts and my prayers.

  5. What a wonderful thing you are doing and how brave you are to be doing it all on film. I was fortunate enough to get my negative test results on October 14th, 2011. It was a very stressful but I knew, regardless of the results, that I always wanted to know. I got insurance and finished college and knew it was the right time. I am lucky to have my dad even though he is in a nursing home. I know you must miss your mom every day but just know she would be (and is!) so proud of you! If you have questions for me about my preparation for and testing process before yours – please feel free to contact me! Best wishes to you.

  6. kristen,
    as many times as i’ve watched this i still get weepy,I so loved to hear your
    mom’s voice with that beautiful British accent!
    How proud she must be of your courage and lack of self pity or selfishness.
    I hope you spark a fire for the cure for Huntington’s

  7. Keep on plugging toward your goal, Kristen! Your mom was a fighter and I know you have her spirit too. May God bless you and Nathaniel too. xx xx

  8. My aunt died last year of Huntingtons. My cousin, best friend, tested positive. His three siblings have not been tested, there are 12 children at risk. My Aunts family extends wide. I will not get Huntingtons. I am not at risk. But it affects my every day. We do an awareness event every year in Kalamazoo MI . People need to know the power of awareness, how much research can help so many. Thank you.

  9. Kirsten,

    I am wishing you much luck with everything you are doing and going through. There are many of us out there behind you. Please feel free to lean on us anytime. We are very proud of you and can’t thank you enough. Our thoughts our with your family too.

    BT

  10. Thankyou for making a difficult story into a positive thing. My daughter has HD. She is 41. My husband died at age 57 in 2006. I’ve been made stronger by HD but this brought tears to my eyes. I too work relentlessly to bring about awareness.Her son is 14 and at risk. I have been fortunate to connect with Eastern Virginia Medical School,EVMS. They are making a video to educate first responders about HD. I wish you the best in life and in your efforts.

  11. Kristen~
    Thank you so much for taking the time to talk with my husband and I after the Huntington’s meeting in Raleigh, NC. My heart was/is very heavy with having to tell me children about their chance of having Huntingtons. You really helped me see that they can work through this. That there is hope. Bless you for what you do and who are.
    ~Tonya Lunsford

  12. Way to go Kristen! A remarkable piece of work – moving, accurate, balanced and very very human.Thanks for giving so many a voice!
    We are so lucky to have you in our community and our home state of North Carolina! Mary Edmondson

  13. Hi Kristen, Thank you for what you do. We have a relative with Huntington’s. Do you know yet when and where your documentary “Twitch” will be released? You are a courageous young woman. We have a ten year old grand daughter who doesn’t know her daddy has Huntington’s.

    God bless you.

  14. Kristen.
    You are an amazing and brave young lady, thank you so much for doing this documentary, so many people out there really need to know.

    I wish you well on your life journey and hope to hear more from you as you continue your life story.
    I have lost a brave husband and beautiful daughter, thought this terrible disease, very heart breaking.

    Love and hugs to you Vera Ingram Australia

  15. Hai Kristen I know how it is to struggle with the thoughts what if I have the disease. My mom has Huntington disease also. Recently I’ve got a test if I have the disease too.I thank god I don’t have HD! Good luck!
    PS: sorry for my bad english

  16. Thank you Kristen. You met a childhood friend of mine last night. His name is Dave and he put out an email blast today mentioning your movie. I am impressed. Your first documentary is OUTSTANDING and will help patients and their families. Thank you for putting this together. I’ll be sharing your movie on my facebook page and via email. WTG young lady!

  17. My twin brothers that are two years younger then me and my sister that is two years older then me have Huntington’s disease. I have been watched by family members and my husband and so far no signs. I turn 40 this year and feel sad that I see my siblings going through this. But to see them have a good approach to it gives me hope. Someday they will stop this terrible disease. I dont plan to get tested unless I show signs. But for those that do remember to live life to the fullest and never hold back.

  18. I was really impressed with your speech video in Tedxteen. Also, I just want to support you by my whole heart and I really hope your journey goes well. Overcoming the difficulties you faced when your mom was spending hard times with the disease must be shocking by itself. The most part that made me touched was that you made your hard experience a chance to know more about the disease and try to figure out the possibility of your inheriting the disease.
    You are such a strong woman and I know you can do it!

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  21. Kristen

    Tonight, I was very inspired by your story. (I cried a lot.) You show the beauty of taking an action and sublimation the pain. I want to share your story with many teenagers and teachers in South Korea. You are a very effective role model to guide our students.

    Yejun

  22. Hi Kristen,

    I’m not trying to make this about me… but do please read.

    I am a 44-yo mom of three little girls and married to an amazing man. I received my positive HD result three weeks ago. The testing was decided after showing symptoms I have for the past 2 years. In just a split second of hearing that dreaded word “positive” my whole life changed.

    If there is one “positive” thing that I can say about my diagnosis is that it is giving me the chance of TIME. Not as much as we had EVER expected or hoped for, but enough to make changes at how we look at our every day crazy, fun, exciting chaotic life and realize we have TIME to enjoy this. not everyone has that opportunity. My life is not over tomorrow, next week or next year. But soon enough that end WILL come and I want every minute of my time to count. I am thankful for my TIME.
    My sincerest blessing and support to you as you go through this journey. Just remember… TIME…

  23. Hi Kristen,
    Well done on what you have achieved in your younger years with bringing attention to Huntington’s Disease. I have lost a grandmother, father, two sister’s and a brother to this disease. I was tested for it some years ago when my children were old enough to be considering having their own children. It was difficult at the time because it was my daughter who wanted to know so she could decide to not have children if I had it, and could carry to her, but my son didn’t want to know so while I was sure I wouldn’t carry the gene, the fear was what if I did, and how much my son might resent me for finding out. Fortunately, I tested clear and so my children went on to have their own. My family still faces the possibility of my younger brother having it and his children and the children of the deceased kin. Good luck in your endeavours and I am sure your mum would be very proud of you watching from the sunny blue skies :)
    Kathy

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