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It’s the end of 2015 and as every other non-profit in the world is doing, I too am reflecting on the past year and my journey with Twitch. However, this year is different than others as 2015 marks the final stage of the journey I began as a junior in high school. It’s strange thinking it’s all coming to an end. Once I launched Twitch online for the general public, it felt kind of like sending a child off to college (not that I have personal experience, but one can imagine). In some ways, it was a relief. Twitch made it. My responsibility for the film decreases dramatically now. In other ways, it’s a bit sad to think that the the traveling, screenings, and marathon editing sessions are over.
Twitch has defined my entire college experience. My freshman dorm knew me as the documentary kid. I used my support systems at school to help me push through the hardest parts of making this film and celebrated with those friends upon a successful screening and worldwide tour. Now that I am one-third through my senior year, my academic career is no longer defined by this film. It’s the first time in my life since 3rd grade that I go about every day without my own personal project or plan. I have no idea what I am doing and, while a bit weird, I haven’t agonized over it. I’m not too worried about my future because of what I have done with my past.
Of course I wonder where my next job will be or if I’ll like the city in North Carolina I move to in July, but in some ways, not knowing seems normal. It’s become a pattern in so many aspects of my life that I feel like I’m an expert in the practice. From genetic testing to screenings, I never knew what to expect or how audiences would react. Sometimes, this fear has been nauseating. At other times, exhilarating. For me, I’m just thankful that I’m at that point where fear doesn’t paralyze, but, rather, enables.
This will most likely be my last blog post regarding Twitch. I might be back here to talk about new ways you can see the film or perhaps an exciting media piece. But otherwise, my time here is done. Someday, this film will be free to the general public. Anyone and everyone with an internet connection can learn about genetic testing and the impacts Huntington’s disease will have on a family.
Someday, I hope this film will no longer be needed. Someday, I hope that genetic testing is no longer the trauma that it is today. Someday, I hope that Twitch will become irrelevant as doctors and researchers learn how to treat, halt, and maybe even reverse HD. Someday, I hope nobody hears the word Huntington’s disease and feels the knots of a death sentence forming in their stomach. Someday, we will live in a world that is HD free.
Until then, we will need every tool we have to educate the general public about genetic testing, Huntington’s disease, and the stigma that surrounds both. An educated public is an empowered one. An educated public makes informed family planning decisions. An educated public participates in clinical trials. An educated public ceases to discriminate against those who have no control over the body to no fault of their own.
Twitch set out to create that educated public. We’ve added over 5,000 individuals worldwide to the ranks of the informed, but with your help, we hope we can expand that impact exponentially.
Share Twitch with the world. Ask your school library to purchase the DVD. Tell your biology teacher to discuss it in class. Stop individuals making fun of mental or physical illness. Be tolerant. Be kind. Be understanding.
For now, my work is done. I am taking a break from HD advocacy for my personal health and well being. Perhaps someday I will return. I hope that when that time comes, I am no longer needed, but I know that will not be likely. So thank you to all those who continue to fight for a cure, for better treatment, and for a better world for those affected by HD. Your struggle is noted and appreciated. And thank you to those who realized that they need a well-deserved break and are taking that time to heal from this disease that consumes our entire family, our entire community. We recognize your need for self care and respect your decisions. We will welcome you back with welcoming arms if and when you return.
To those who have supported me over the past five years, I cannot express my thanks in words alone. To all those who donated to the campaigns or helped me through anxiety attacks both relating to the film and my life with HD, thank you. We often say things would have “never been possible” without support, but I reiterate that at the risk of sounding cliche. I would not be writing this blog post unless my community stepped in and stepped up in the way that they did. So thank you.
This is the end of one journey. On to the next. But for Twitch, it’s time to roll credits.
With eternal love and appreciation,