The Twitch Tour is Back!

Hello Twitch supporters new and old,

It is with great pleasure that I announce the dates for the Fall 2016 Twitch tour. I am ending a year long hiatus and will be opening up the tour once more for those who want Twitch and myself to come to their school/program. I am happy to visit classes, host school wide screenings, talk on panels, and participate in working groups, as well as screen in the surrounding community. Additionally, this year, the school/program will also receive a copy of the DVD and digital file for unlimited use in their classrooms and libraries. I hope you are excited as I am about this announcement!

Here are some basic logistics for the tour:

Dates: August 22 to November 18

Cost: $2,000 honorarium + travel/lodging

Procedure: In order to book a date for the tour, please reach out to kristen_powers at ymail.com

Audience: In the past, Twitch has been incredibly successful when screening to medical students, genetic counselors (and students), biology/neurology classes/seminars, genetic testing/counseling groups, as well as pre-med or local high school science programs. In one year, we screened to over 5,000 individuals in 30+ cities spanning 6 continents.

This is a nationwide U.S. tour so feel free to send this e-mail to interested parties from Hawaii to Maine to Texas to South Dakota! We know no bounds! I realize the cost is prohibitive for many smaller programs so I am happy to find the best ways to bring Twitch to your neighborhood by partnering with other local programs. Please don’t let cost be a deterrent to reaching out!

Please let me know if you have any questions regarding the tour.

Thank you again for all your support of Twitch! We can’t wait to work with all of you in the future!

Sincerely,

Kristen

Guilt Reexamined

The other day, a friend of mine in the HD community posted this story to her Newsfeed.

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Source: http://www.timesunion.com/tuplus-local/article/Albany-man-with-Huntington-s-warned-to-control-6762909.php

While a seemingly inconsequential matter in the lives of many, I found my heart sinking as I recalled one of the most painful memories of my mum’s HD experience.

For 12 year olds, parents are already embarrassing enough. My mum was an entirely different story. Going out in public with my mum was an absolute ordeal, to no fault of her own. Her chorea at this point was fairly severe and people constantly stared at us in malls, restaurants, parks, everywhere. I hated it when my mum came out in public with us.

At this point, my mum lived with my grandmother. Her symptoms were developing quickly and going out was logistically challenging. However, true to my mum’s character, that didn’t stop her from going out. One day, she asked me and my brother if we wanted to go to the movie theaters with her to see the new Willy Wonka movie. Both of us vehemently refused the opportunity. My grandmother pulled me aside, reminding me that these opportunities with my mum were limited. She knew I was embarrassed by her in public and told me that if anybody stared, I stare back and refuse to back down. While her advice on staring didn’t float with a shy kid like myself, I realized how sad my mum would be if both her kids turned her down. I agreed to go.

My mum and I sat in the very back of the theater, as far away from others as possibly. However, a family sat right in front of us, right at the brunt of my mum’s wayward kicking legs. For a full hour and a half, this family decided to throw some serious shade at us in that dark theater. The act of staring back doesn’t feel so effective when you’re being blinded by a discriminatory gaze. Instead of moving, they decided to complain to one another within ear shot.

To this day, I remember that experience in the theater. I remember the extreme guilt I felt at nearly turning down the opportunity and still feel it often today. I am mad at myself that my mum’s excitement and desire to be with me was not enough to overcome the fear of judgement from others who had no right to stare. But I was 12 years old. I give myself some slack from time to time, but it is not always enough.

Today, I invest much of my time into distributing my documentary, working for the Huntington’s Outreach Project for Education at Stanford, and collaborating as a board member with the Huntington’s Disease Youth Organisation. All of these projects strive to educate the world about Huntington’s disease because a more educated world is one that is less likely to stare at an individual with chorea. That world is less likely to make fun of your professor who curls his toes as a result of his movement disorder. That world helps one another understand that people with neurological disorders are people first, and that they deserve to be treated with respect and dignity, no matter how many times they accidentally kick your seat at the movie theater.

To hear a story like this, a man being asked to leave as he tries to enjoy a movie in public, devastates me because ten years after my experience, this type of misunderstanding is still happening and it is something that we HD families remember forever.

This blog post is to serve as a challenge to the world. How do you react to somebody with noticeably different physical features or movements than you? Do you stare? Do you ask for information? Do you respond to rude comments made by others? How do you ensure a 12 year old will never reject her mother’s invitation to the movie theater for fear of judgement by others?

HD is devastating enough; we don’t need the world punishing us too.

 

 

Roll Credits

5 years

$75,000

6 continents

30+ cities

5,000 viewers

Available worldwide on iTunes, Google Play, and Vimeo

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,

Kristen

JPS Summit smile

One Soul, Two Bodies

As a kid, I never retained a best friend for more than a couple of years. Switching between three elementary schools and two middle schools did not provide the stability one would hope for when trying to make a lifelong friend. I envied my classmates who could brag about the fact that their friendships endured since the beginning of Pre-K. I wanted so badly to know what it would be like to befriend a person with that level of intimacy and history.

In December of 2008, the opportunity arrived in the form of a curly-headed kid walking into my first environmental club meeting. His first words were, “Hi, I’m Daniel. Is this the Green Tiger meeting? How can I help?”

Nearly seven years later, Daniel no longer has to ask how to help. He knows me too well; I often receive phone calls from him right as I consider calling him for support or to share exciting news. If we want to delve into pop culture, he’s definitely in my Top 5.

Our friendship is unique. He is one of my very few close friends who knew me well before my genetic testing for Huntington’s disease at 18 years old. Daniel first learned of my personal history of the disease about 8 months into our friendship. At this point, I still struggled to figure out how to share my story with people. He was one of my first test subjects and he passed.

As the years went on, he was the first to listen to my attempts to voice my internal struggles. He is one of three people outside of my immediate family who has seen me cry. Most of the time, these tears have been the result of topics most 17-year-old boys never have to listen to.

It was Daniel who first learned that I had considered suicide if I ever became symptomatic with Huntington’s disease. It was Daniel who first learned from me that my mum had died. It was Daniel who was the subject of the poem for my answer to Stanford’s admissions question, “What matters to you and why?”. It was also Daniel who was there to hold my hand as I braced to hear the genetic testing results that would forever change my life.

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A few hours after finding out I would never develop HD

Aristotle was apparently quoted as saying a friendship is one soul living in two bodies. When I think of all I’ve put Daniel through, I sometimes cannot fathom how he still remains my friend. Whatever reason he comes up with, I’m just thankful that he has never left me.

Growing up, many people assumed we were dating. I suppose it’s hard for adults and other teenagers to imagine that two teenagers could ever be so close and not be in a romantic relationship. I’d be lying if I said we didn’t consider it. (It was my senior year and lasted all of 30 minutes of consideration.) We were lucky enough to have parents who reminded us how unique and special our friendship is and that putting an expiration date on something like this for a high school romance would be naïve and dangerous. I’m so glad we both listened.

Daniel and I have remained close despite our long-term distance. (I study in California, he in North Carolina.) We have remained close through each other’s romantic relationships (and been there for each other during the difficult break ups). We have remained close despite the challenges adulthood has thrown at us and together, our soul has thrived. We challenge each other, educate each other, and push each other to reach outside of our respective comfort zones. I am constantly becoming a better person through our friendship.

When I reflect on my experience with Huntington’s disease, I do not know how I would have coped without Daniel. While there were many days I felt guilty for burdening him with the emotional load that is Huntington’s disease, there were also many days were he made me feel ethereal happiness. Some of the best days of my life, from exploring Montana to traveling to environmental activism events, feature Daniel. He is an inseparable part of who I am. I would be lost without him.

If I could wish one thing for every person on this earth, it would be that they could someday find a Daniel so that they too can know what it is like to experience this type of love.

KPDW Powers wedding

This piece is quite obviously dedicated to Daniel. I love you and thank you for always being there for me. Here’s to becoming old wrinkly friends eating ice cream on rocking chairs. I’m more than thrilled to join you on our journey there.

Love,

Kristen

Kristen’s Stanford Admissions Response to “What matters to you and why?”

Stanford asked ‘What matters to you and why?”

and I wonder whether it’s best to outline this through the medium that matters most to me

a medium that seems to always show what I am thinking better than prose can.

Poetry done well can make you connect to people you didn’t think were similar to you at all

and if we want to get at the heart of things

poetry has a way of pulling those strings and making you think about what is really all that important in your life.

So my poem/essay starts with a friend.

This friend is a boy and no we will NEVER be in a relationship

but I care about him as much as I imagine two 90 year olds do when they sit in their rocking chairs

holding crinkled, knotted hands after sixty years of marriage

thinking about the day they met

able to express their appreciation for each other with the blink of an eye

as if a wink from an orb that has seen so much, and at times, too much, can actually say

I love you.

In this cynical world of economic recessions and conflicts that sink you into a depression

having a friend who can point out the glowing hope at the end of a shooting star and tell you

“That’s how bright your future is”

can lift you beyond the Heavens into a celestial body you didn’t realize you were capable of fulfilling 

And when that friend understands saying nothing at all works as well as saying just the right thing

it makes the loss of your mother that much easier

Few realize that all you need when the world shatters around you is just one solid piece under your feet

supporting the weight of your pain,

even if it takes the strength of Atlas.

When you can release your soul and not fear judgment like you would from some other human who has declared himself God

you know you have placed your world in good hands.

Aristotle said a friend is one soul living in two bodies

and without my own best friend, I’d be nowhere near reaching my soul’s fullest potential

 

 

 

 

 

 

 

 

The Summer Doldrums

Hey there, fans! Long time, no speak!

I want to apologize for the radio silence over the last few months. In April, we completed our United States screening tour by visiting Toledo, OH and Lansing, MI. On the plane ride back, yours truly realized the extent to which she was burnt out. I got home at 11 PM that night, turned off my phone, and slept for the next 12 hours.

While the spring was an amazing time, the burn out of the tour was manifesting itself in many different forms. From dwelling on my childhood to my own realization that I will never escape the cloud of HD (it may define me, but it does not control me), it was an emotionally distressing time. A huge thanks to my many friends who helped me through my weakest moments. After a few weeks of silence and reflection, I finally have the energy to update this blog.

While I may have been quiet on the public facing front, the Twitch team has been quite busy behind the scenes. We are preparing to launch an online edition of the film later this Fall, finalizing last minute details of our September Australia Tour, and figuring out the logistics of public performance rights for universities and medical schools. It’s been slow going, as I am also working about 45 hours a week at another non-profit here in Chicago. I greatly appreciate your understanding of my social media absence.

I’m hoping that we have a productive and exciting Fall launch of the film. Please keep your fingers crossed that everything goes according to schedule. I am beyond excited to move this film to a place of universal access for all of our fans. After four years of blood, sweat, tears, and a little bit of DNA, I cannot wait for Twitch to make its own foray into the big, wide world.

With lots of love,

Kristen

JPS Summit smile

 

Going back to where it began

Sometimes you don’t realize how much you need to come home until you’re there.

That’s how I felt returning to the We Are Family Foundation’s Just Peace Summit four years after my participation as one of their Global Teen Leaders in 2011. I was to screen Twitch for its grandest premiere, right in the heart of the Big Apple. It was a special screening for many reasons. Not only was I screening in front of a crowd of hugely influential teenagers and their facilitators, but I was also returning to the place where Twitch got its start.

In 2011, I was invited to participate in a global summit for teen leaders as a result of my work with the Chapel Hill High School Green Tiger Campaign. I arrived in New York City in March of that year, unaware of what type of impact the week would have, not only for myself, but on thousands of individuals affected by Huntington’s disease.

As a global teen leader, I was tasked with creating an action plan, a detailed guide for executing a project related to my endeavor. I tried to write one for my environmental campaign, but something felt off about it. I talked to my mentors and facilitators, asking if there was any flexibility in switching my project to something I had always been interested in, but never had the chance to pursue: film making.

I switched my action plan and developed the first proposal for Twitch. My mentors from the summit connected me to producers, directors and seasoned film makers who helped me develop a film treatment, production plan and fundraising goal. By the end of 2011, I was ready to execute my new and improved action plan.

Four years later, I was standing in the very same NYC studio where the idea for Twitch came to fruition. Not only that, I was amongst family members—new and old Global Teen Leaders, mentors, former TEDxTeen speakers, and friends—all of whom shared an  intense passion for creating positive impact in their communities.

And I was SO incredibly nervous. There’s something about being in a room of young CEOs, leaders, and future presidents, all under the age of 20, that makes a person’s stomach fill with butterflies. Maybe the nerves were a result of my high standards or perceptions of a tough crowd, but I think I just knew that no other screening would be this special.

On Wednesday, March 25, I hosted the #bestscreeningever at the #bestsummitever. Over 80 individuals from the Summit and the city came together in the welcoming studio to share popcorn from the Prospector Theater (learn more about this awesome organization here) and my story. Monique Coleman, a close friend best known for her role in the movie series High School Musical, opened the night and from there, the lights dimmed and the screening began.

At the end of the screening, Monique and I opened a Q&A for the audience. I received some of the most breathtaking stories, questions and statements. From my heroes to cancer survivors to genetic counselors, the Q&A and meet & greet afterwards were both profound and absolutely life changing.

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After the program ended, I received congratulations from the people I admire most. Several individuals came up to me offering assistance in the distribution process, many of whom would e-mail me in less than 24 hours with affirmations, introductions, connections and tips on getting Twitch out to the world. Some of these e-mails inspired me to continue my work beyond this screening.

One of these can be found below:

Congratulations on last night!!! I am so so happy I got to be there and share it with friends. The documentary was breathtaking and impactful in so many ways. I loved that it not only increases care and awareness for a very important cause but also transmits a broader, positive message about living life with passion and trying to find happiness now, rather than later. I feel those lessons more strongly than I have in awhile, and I hope it sticks –  when it fades, I will think of you and the film to reignite them!

Additionally, my hero posted a Facebook photo and comment that described the night far better than I ever could.

NancyKPBestScreeningEver

It’s really hard for me to articulate the night of March 25. This blog post is frustrating to write because I feel like I can’t do this screening justice. Until I can find the words, I will leave you readers with a profound thanks for continuing to support me in this journey. The past four years have been frustrating, emotional, rewarding and life-changing. At times, I didn’t think this film would ever come to fruition. But with the support of my many families, I was able to return home to the place where it all started. I will never forget it.

Kristen

Happy Birthday, Dad

March 15, 1962: A hardcore Bostonian sports fan becomes the newest member of Planet Earth.

His birth didn’t make any headlines or shatter the trajectory of the planet, but to me, his presence is everything.

On this day, my father was born.

From what I can tell, my dad always wanted to be just that…a father. And on October 30, 1993, yours truly fulfilled his dream (what can I say, I’m just a genie granting wishes here).

Despite the happiness I brought him (l was a real cute baby), life wasn’t going to be a walk through Disney land for either of us.

Soon after my brother was born, my mum, my dad’s wife, changed. Her behaviors became wild and unpredictable. Her body moved and contorted in strange ways. In 2001, it became clear that a healthy relationship between my mum and dad was no longer feasible, despite the love they felt for one another. She wasn’t the same woman he had married. And a few years later, we found out the ways in which this statement was strikingly true.

My mum had custody initially after the divorce. However, when it was clear that she was unable to care for herself, let alone two kids, we all knew something was wrong. Upon my mother’s Huntington’s disease diagnosis, the court gave my dad legal custody and we moved to a new town yet again.

And damn was I bitter about it. At the time, I was unaware of my mum’s disease status. I had yet to hear the words “Huntington’s disease.” I had no idea as to why we were taken away from a school I loved and a mother I felt a desperate need to care for.

If I knew of the stress the diagnosis bore upon my dad, perhaps I would have sucked it up. If I knew my dad’s job change was not a step up the career ladder, but rather one with lower pay and more travel hours in exchange for working at home and keeping custody of his kids, perhaps I wouldn’t have complained. If I understood the lengths my dad literally drove for me and my brother, three hours roundtrip every other weekend, so that my brother and I could visit his ex-wife, perhaps I would have contributed more.

But I did none of those things and yet he managed to be more than I could ever dream of in a father. Not only did he stay despite the challenges, but also he managed to hide all of these sacrifices from us and did everything in his power to give us a happy life full of opportunity.

When I was at-risk for HD, I didn’t want to have children, even if they had no risk of the disease, because I did not want them to have the childhood I did and I also feared that their father wouldn’t stay through the trials that HD throws at families. I wouldn’t want to bring a child into that kind of world.

In many Huntington’s disease families, the significant other leaves. To some extent, it’s understandable. HD is one of the scariest diseases out there, affecting not only the loved one but those doing the loving as well. If you are not stuck to that person by blood (and even if you are), the temptation to leave is great. I’ve heard so many stories of friends forced to become caregivers for parents and siblings in their early teens because their other parent could no longer handle the burden.

Thankfully, I was never one of those teenagers. My dad stayed.

Today, I am a 19 hour plane ride from my dad. I cannot be there in person for this momentous occasion, but I can try to evoke my presence into these words. This Patriots Loving, Sam Adams sipping, ice cream obsessed father is far more than just my dad. Hero is an easy go-to word, but he encompasses so much more and I’m not sure I can ever do him justice in writing.

My father is responsible for where I am today and very much contributed to who I am. And I love me and my life so I am beyond grateful for his role in that.

Happy birthday, Dad.

Thank you for inspiring me to work even harder when I want to give up. Thank you for guiding me through some of the hardest years of my life and celebrating the happiest. Thank you for showing me what love looks like by bestowing it upon me. Thank you for being my dad.

To this birthday and dozens more.

Love,

KP

DadandKPFav

 

 

 

 

 

 

 

Making our way to Australia

It’s officially happening! The Twitch team will be making their way to the land down under in September 2015. We are super excited! Not only will this be our fifth continent, but we will also finally be reaching the dozens of families and genetic counselors who have requested our presence for an in-person screening and Q&A. What’s the caveat? The usual: $$$$. Yes, Kristen here, once again begging you to open up your wallets one last time for the cause. The Twitch Tour will be ending this year and this is our very last push for funds before we transition to online distribution. So don’t worry: yes this is a blog post asking for your money, but it’s also the last time. Always look on the bright side, yah? This time around, we’re asking for a cool $5000 on IndieGoGo (not bad in comparison to our other campaigns). This campaign will fund my team’s flights out to Australia, travel to five different cities, venue rentals and lodging. (We hear the Australian bush is not the friendliest of accommodations.) Australia Map In case you’re waffling on whether to donate or not, consider this: 1) it’s tax deductible for American citizens (a bit ironic, but we’ll take it); 2) we’ll be targeting very stigmatized communities in Australia, providing outlets for conversation about taboos surrounding the disease; and 3) Your donation may just empower an individual to speak up and raise awareness about HD and genetic testing, using the tools that Twitch provides. Pretty powerful, amirite? We’re not all wealthy, but even USD $10 would help enormously. Can’t contribute that much? Please share the campaign on social media and with friends and family. We appreciate any support we can get as we attempt to raise one last round of $5000. Thank you and much love! -Kristen For more information on the campaign, please click here. https://youtu.be/PR0BeZuEh8Y

The Fourth Continent

After 45 minutes without power, a crowd of over 80 dedicated individuals made their way into the Labia Theater in Cape Town, South Africa. They were Stanford students, local HD community members and friends of the organizers and they were all there on a Sunday night to watch Twitch.

Thank you to The Labia for hosting us!

Thank you to The Labia for hosting us!

It’s fairly incredible and heart warming to say that in less than a year, Twitch has been screened on four continents: North America, South America, Europe and Africa. When I had started creating this film, I had only ever left the States once. Now, within a year, the seven continents goal is very much in sight.

Despite the varying languages, cultures, and customs, every single international screening has been an incredible success. It seems that Twitch‘s message is able to reach a universal audience, both in terms of Huntington’s disease awareness and genetic testing education. I feel incredibly lucky to meet individuals from all over the world, some who have very similar stories to my own.

I wanted to personally thank one incredible woman who made the Cape Town screening possible. Her name is Jess, she’s from a Huntington’s disease family, and she may be the most effective HD support group leader I have ever met. Not only did she create the local support group, but she has also managed a very successful group of locals over the course of four years now. When I e-mailed her about a potential screening, she already had a theater in mind. Within just a few weeks, she booked a space, made posters, advertised all over Cape Town and convinced the members of the local support group to attend. She is one incredible woman and I am so proud to have organized this event with her. You rock, Jess.

Thank you all who made the 4th continent screening a smashing success. You are amazing.

(Note: Twitch has plans to visit Australia in September 2015 (Continent #5). If you’d like us to reach a certain location, e-mail us. Additionally, if you know of universities or science programs in Japan, South Korea, Taiwan or China that might want to see this film, please send suggestions and introductions our way!)

A Reflection on 2014

This month, Twitch celebrates the end of its 2014 Tour, the very first stage of a larger distribution plan for the film finished in February. It’s been an incredible ride and I just want to take a few moments to reflect on the journey this film has taken me on.

In February 2014, my team completed the editing of the film and was able to share it with family and friends of the Stanford/Palo Alto community. Monique Coleman, Taylor of High School Musical, flew all the way out to emcee an incredible event of 100 people and four panelists. While this event was only the beginning of a very long tour run, it was by far the most memorable, not only because it was the first, but because it was heartwarming (and a bit overwhelming) to feel the love from all my family and friends who were there to witness the momentous occasion.

Monique Coleman

I made my way down to Santiago, Chile soon after, convinced I would have a break from the film. Of course, Twitch is like a baby and there are no breaks. I found myself screening at an English school with 17 teenagers, thanks to a local advocate, María Jesús. She planned the screening, but did not tell the teenagers that I was coming to speak to them about it. Upon walking into the room, you would have thought a celebrity walked in. The girls clasped their hands to their mouths; the guys sat their wide-eyed. It was a great experience being able to talk to them. At the end, they were very excited to take their picture with me. Many asked for a personal picture and even an autograph. The students even presented me with a personal school pin as a thank you gift.

Santiago Students

In July, I officially launched my tour. The screening dates quickly accumulated. I started off in my original hometown, Boston, allowing my family and even my mum’s best friends to attend. From then on, Twitch and I hit Maine, Delaware, Houston, Austin. We even had the opportunity to screen in the Smithsonian Museum as part of the Genome Zone exhibit in the Museum of Natural History. Now that is an experience I will never forget.

Screen Shot 2014-12-12 at 6.38.34 PM

I knocked off several new states along the way. One of the most memorable ones was Alabama. The University of Alabama Birmingham treated me like a celebrity. From a personal tour of the city (check out the Civil Rights Institute if you have a chance) to a dinner at the local country club, I was spoiled. However, it was a complete shock to me when I walked into the screening room to see a diverse, excited crowd of over 400 people ready to watch the film in the middle of a business day. I’ll never forget the energy, enthusiasm and level of inquiry in this group.

Before starting up a new school, I made a stop in Barcelona as part of the European Huntington’s Disease Network Annual Meeting. Normally, these types of conferences can be very dull and less than engaging if you’re not one of the scientists. However, as a member of the Young Adult Working Group, my skills were put to the test as we developed programs that would help youth all over the world cope with the effects of Huntington’s disease.  The members of these groups were incredibly supportive at my screening and panel discussion, held after four different films were screened that weekend.

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Somehow, I then managed to remain on tour while a student at Stanford. During this time period, I made a memorable trip to Iowa (man those were memorable shakes from the Hamburg Inn), two warm and sunny adventures to San Diego (Auspex and the American Society for Human Genetics hooked a girl up), and spent a day at my little brother’s rival schools (Boo Gamecocks! Go Clemson!).

As I write this, I’m currently working in frigid Philadelphia in a friend’s office. I am preparing to go to Allentown tomorrow, Pittsburgh on Sunday and then wrapping up where I started in Boston.

It’s been helluva year. We’ve screened to over 2,000 individuals in 18 cities across three continents. And that’s just the beginning.

Thank you to all who made the 2014 Tour possible. Thank you for your donations. Thank you for your hospitality. Thank you for your event organizing skills. Thank you to those who listened me to rant about the struggles of the tour as well as my long-winded stories of the victories. Thank you to all who made the past three years of tears, sweat and a little DNA all worth it in the end.

I’ll be making a 10-week stop at Cape Town for another study abroad program (screening on our fourth continent!), but I’ll be back to the United States to finish up the last few months of touring in Summer 2015. (We’re also coming your way, Australia! Stay tuned!)

Thank you once again. Here’s to the next tour being greater than the last!

Happy holidays and New Year’s to the greatest fans out there.

Love,

Kristen