The Youthquake is coming

This past Saturday, I had the honor of giving the Huntington Study Group 2014 keynote in Minneapolis, Minnesota. I thought it would be cool to share the speech and slides with you all. Let me know what you think.

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View slides here.

My name is Kristen Powers. I am the executive producer of Twitch, a story about my genetic testing for Huntington’s disease. Now, I haven’t had a midlife crisis, grown any white hairs, or had to deal with an obnoxious teenage child yet (unless we want to count a younger brother), so I’m going to talk about what I know. It’s actually a time period everyone in this room is familiar with: childhood.

When I was young, I had an obscenely keen sense of what is right and wrong. Sometimes, that made my life a little harder, especially when the other elementary school kids thought I was being lame when I didn’t join in on teasing peers or harassing the teacher. Unfortunately, it also made me far too aware of how unjust Huntington’s disease is.

My mum was diagnosed when I was nine years old, but she had been symptomatic for many years previous to 2003. I was not made aware of this disease until I was eleven years old. Around that time, I also learned about my genetic fate with this disease. And it sucked. It sucked knowing that my mum would never attend my elementary, middle, high school or college graduation. It sucked knowing that she would never meet my future husband. It sucked that I had to spend the next six years living with this question mark hanging over my head. It all sucked. My childhood was scary, hard, and at often times, felt nonexistence, especially the days I spent caring for my three-month-old brother while trying to keep an eye on my mother, all at the age of 11. Adults have always called me an old soul, which I found to be somewhat alarming. To be an old soul, to me, meant I had missed out on the years I was supposed to transform into an annoying, dorky teenager from a cute, dumb kid. All the older people around me compounded the issue by saying that childhood was the best time of their life. You’re telling me it all goes down hill from here. That’s enough to induce a panic attack in a kid who keeps on hoping her childhood will eventually begin.

Fortunately, I was able to block out those who chose to turn a blind eye to the beauty and hope surrounding them. Believe me, it wasn’t easy. Some adults were like a pack of wolves. I’d say that I didn’t enjoy my childhood and teachers to parents of friends would instantly attack with “These are the best days of your life” “don’t be so ungrateful.” It’s easy to use the term childish for moments like these, when a human seems incapable of rational thinking or appreciation for what’s in front of them. In our society, we often connote it with being unreasonable, insensible, and selfish. Honestly, I’m not really sure why or when we made that association. Last time I checked, it was the adults starting wars, breaking apart families and signing Babe Ruth to the Yankees. Sure, every age demographic has its pros and cons, but I’m sure adults wouldn’t like it if we associated greed, pessimism, and unhappiness with the term “adultish.”  We don’t lecture you about the planet you trashed, the wars you started, the politicians you elected into office…okay, maybe we do complain a lot about the chores you make us do, but remember that our generation is nowhere near as critical of your generation as you are of ours. Maybe there’s a lot more wisdom in childhood than we give it credit for. It’s easy to let the adults of this world jade you into thinking it never gets better from there. But maybe we shouldn’t listen to those adults. Maybe we should listen to the kids instead.

You’ve probably heard of the Millennial Generation. In fact, you might hate them. If you have a teenager, they often look like this (hold phone in front of face). IN FACT, our society is so tapped into technology, Google made a device that literally obscures your vision so that you can now access the Facebook secretly while your mom lectures you about the laundry. We’re also great at eye rolling too, especially me. I believe no other parent is as happy as mine are to have a documented eye roll on camera in my film in response to one of their jokes.

But I’m here as a voice for the Millennial Generation and I want you to know what we’re truly capable of. I’m not 100% sure, but I think I may be the youngest keynote speaker at HSG. As a result of minimal representation of my age group at these types of events, I thought I might speak out for them today. Because while you might view us like this, I view the power of my generation more like this.

If there’s ever an example of what kids can achieve on the path to happiness despite the most adverse of challenges, it’s the kids of the Huntington’s disease community. I hope you all have token note of the members of the NYA, YPAHD and HYDO, to name just a few organizations empowering kids to take back their lives from Huntington’s disease. Most of these kids haven’t even finished high school yet and they’re already giving presentations on what HD is and how individuals of all walks of life can help those affected, which includes lobbying Congress. For those of you who think we all waste our time on Facebook, many of those affected are using it as a means of communicating with others who understand our struggles, especially when we live in a remote region or don’t have access to a car that would allow us these in-person interactions. In fact, Millenials are pretty bad-ass at finding ways to affect change before they can even vote. Volunteering rates for our age demographic are the highest in its documented history, which you know means that my generation has found a way to get involved, despite what the naysayers want you to believe. How do a bunch of obnoxious, childish teenagers do it? let me lay it out to you by sharing a personal anecdote.

When I was first learning how to cope with Huntington’s disease, I was so frustrated that everything and everyone around me was sad or stressed. The adults had a lot on their plate and it was showing. My dad, Mr. Mom, my all-time hero, noticed the sour mood this often put me in. He was always quick to tell me, “Choose your attitude, Kristen.” While this particular saying of his was never appreciated when I was being a grump, it stuck.

Sometime when I was 12 or 13 maybe, I created the InnerKid philosophy. This harkens back to my earlier statement about the beauty of childhood. Kids are awesome at having fun and being happy. Yes, they have obnoxious temper tantrums and cry at every little booboo, but have you noticed how quick they are to recover? Kids don’t avoid their emotions. They embrace them, acknowledge them, and get over them. And pretty quickly at that. So the idea of the InnerKid was to hone this beautiful ability to find happiness in the simplest of moments. I was determined to be happy and find bits of meaning, despite the circumstances.

The InnerKid had a second part to it as well. Adults are REALLY good at telling children that they can’t do something. Don’t touch this, don’t climb on that, oh my god will you please stop putting makeup on the dog. And while they love to complain about the lack of engagement in teenagers today, maybe it’s because the adults are causing the apathy. When I was starting my environmental initiatives, even my documentary later on, I constantly faced ageism. People would not take my ideas seriously nor did they encourage me. Many said my projects were a waste of my time, including Twitch. Today, my documentary is touring in over 15 cities and three different continents as of now so I’ll let you decide if they were right about that. Perhaps it was just a little bit of reverse psychology, but these naysayers gave me a challenge and I was determined to show them just how wrong they were.

It is extremely hard to make a documentary. Most professional films come in around $100,000 in cost. Very few to none of those filmmakers are under 20. Most hospitals cringe at the idea of an outside camera crew recording their operations. The documentary was likely not to ever be made because of the challenges it presented.

So I did a little reflection. Instead of saying, “I can’t”, I broke up the process into pieces and figured out what I could do. I could talk to filmmakers and get their professional advice. I could start a fundraising page. I could make video diaries of my personal experience. Yes, things like raising $10,000 initially seemed crazy and maybe something I could not do. But then I threw some naivety into the mix and equally crazy optimism and said “Let’s at least try it.”

It was a great hurdle for me to overcome these naysayers. Imagine how hard it must be for a kid who doesn’t grow up with a support system like mine. With adults constantly telling us what we cannot do, rather than providing constructive feedback and advice with the cautious optimism of success, it’s no wonder that we retreat back to the safety of our online worlds and friend circles. We fail to find the support we need because we’re stereotyped before our work and potential can even begin to show itself.

Activism is a huge part of my life. When I was creating the InnerKid philosophy, I told myself that I wasn’t going to take “no” for an answer when it came to fulfilling my wildest hopes and dreams. Being a minor with no money, no car, and no title or letters surrounding my name did not discourage me. My dad made sure I kept up this mentality. When I was in 5th grade, I HATED my new school. I would complain non-stop. One day, he told me that I needed to write a letter to my principal with all the suggested changes I would make to the school. I’m not sure if he thought I’d actually deliver it, but one month later I was the student body president of a brand new student council. My dad has always encouraged me to turn complaints into action.

If you still think Millennials are lazy, you haven’t met the teens from HD families who are stepping up into so many roles. Children and teenagers often become caregivers and yet don’t receive the same support as adults do when it comes to coping with this new responsibility. Sometimes, they don’t even recognize their newfound role, yet they take on the same responsibility. In addition to the caregiver role for their affected parent or siblings, many of us additionally take on the role of field representatives, lobbyists, or organizers of film screenings and fundraiser walks. Young people in HD families are different. If you think we are lazy or unwilling to step up to the plate, you haven’t opened your eyes to the power of youth in this community.

Youth: the optimistic realists. The generation that is trying to show the others that they are capable and worth something, but won’t stop if they are brushed away. Stop lecturing us and instead, find ways to help us, to empower our crazy, impossible, maybe even stupid goals and dreams. I’ve heard so many parents shut down their own children at my own screenings. They look at me and think “wow, my kid would never do that.” Yes, not many of us are making films, but it’s crucial to meet your kid where they are at. One parent was talking about how if her kid came up to her and said he wanted to make a film, she’d just laugh. And that’s exactly the problem. Don’t laugh at us, don’t discourage us. Find a way to turn that idea into a YouTube testimonial or maybe a three minute clip in partnership with a  local HD group. Find ways to help us out before you shut us out.

We’re all here trying to do that to cure Huntington’s disease. For many, that goal feels unattainable, but that doesn’t mean we’re not trying. Think of teenagers and young people in the same light. We are trying our best to figure out the world we were given and shape it into something meaningful and beautiful. In the words of the great Kendrick Lamar, adults do not kill our vibe. Instead, amplify it. Help us via mentorship, sponsorship, product venues for conversation, direct financial and academic support to the HD youth. Please, serve as a conduit and assistant as we function in this adult world before we are meant too. You don’t have to take the driver’s seat, but please, at least let me borrow your car so that I can drive change all over my community.

Instead of complaining, we’re doing something about the crazy, mad world we inherited. And we hope that you’ll join in and help us too.

Oh the places Twitch goes

Hello Twitch fans,

It’s been a crazy past couple of weeks. This blog post is very delayed as I just moved back onto Stanford’s campus to start my third (!!!) year here. I did want to take a few minutes though to talk about two wild screenings that just happened. I think you’ll enjoy.

Alabama

Earlier in September, I made my way down to Birmingham, Alabama. This was the first visit of mine to this Southern state and boy, did they ever reinforce the concept of Southern hospitality. The University of Alabama Birmingham treated me like royalty. They personally gave me a tour of the city, which included a stop at the incredible Civil Rights Institute, a place where a history geek like me..well…geeked out. Cameras weren’t allowed inside, but I did note the event with a picture of the 16th street Baptist Church, a sobering location that reminds us of a time period in our history that we must never go back to.

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The next day, the day of the screening, UAB made sure I wasn’t slacking. I had two Q&A sessions with PhD, graduate, and genetic counseling students before the screening, which made it quite tricky to discuss the film. I did manage to have two great insightful conversations with these incredibly bright students. It was also really cool to see so many women in science, dominating their field and researching intense topics like effects of pharmaceutical drugs on the brain.

Finally, time for the screening came. The tech team at UAB took over the entire set-up, so it was an absolute, complete surprise when I walked into a packed auditorium of over 400 individuals. One second…

400 PEOPLE!!!!!

That is the largest single screening attendance I have ever had. I was beyond amazed. I was introduced by Dr. Bruce Korf and Dr. Harold Jones, the Dean of the School of Health Professions. Normally, I like to sit in the back of the auditorium during a screening to watch the audience’s reaction to the film. However, I had to sit in the front for this one, which was actually pretty cool. When my results were screened, the reaction was incredible. It was a whirlwind of energy and fluttering throughout the room that, apparently, from other sources, involved fist pumps and screams of “yess.” If you haven’t seen the film, I apologize, but I have to evoke the level of excited energy in the room at that moment.

Afterwards, I had an awe-inspiring Q&A with the audience. I answered questions about ethics, the pathology of HD, and film’s power as an educational tool. I finished off the day with a great reception with the genetic counseling students in a really funky space called the Edge of Chaos. It was so great. I then had a lovely dinner at a country club with several professors and directors from UAB where I had a breathtaking view of the city of Alabama.

Early the next morning, I boarded a plane to my next adventure after several blessed days of Southern Hospitality. Thanks Alabama! You all rock!

Barcelona

Barcelona was next. I was there to attend the European Huntington’s Disease Network (EHDN) annual meeting as a member of the Young Adult Working Group (YAWG). I had a great few days of sightseeing before getting down to business. It was great to work with young people all over the world on issues that matter to us, which included a lengthy brainstorm on how to support young people as they decide whether or not to undergo genetic testing.

Again, I was very spoiled at this conference and received lots of free food and love. On Saturday night, I gave a speech and screened the film. The reception was beyond my wildest dreams. During the filmmaker Q&A headed by former NBC correspondent Charles Sabine, I spoke about the film along with several other film makers who showed their films at the meeting. The audience was excited about the ability to use film to talk about the disease. It was a very intellectual and emotional discussion that, I think, will result in a greater use of film as an educational tool within the community.

People talked about the film all night and some very excited attendees from Dublin even spoke to me about screening the film on Ireland’s national television station. How cool!

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I can now say that Twitch has screened on three continents and I have officially explored half of all the states in the U.S. How lucky am I?!

Thanks for setting the bar so high, Alabama and Barcelona. I had a great time.

-Kristen

The ALS Ice Bucket Challenge Matters

I’m from a Huntington’s disease family and I want to let you know, I’m a little jealous of the success of the ALS Ice Bucket Challenge. Huntington’s disease affects just as many people as ALS in the United States, but clearly, one is far better known than the other. And that’s why I’m a little bit green with envy towards the success of the ALS Ice Bucket Challenge. But, man, I’m more than peeved that people are such naysayers of the cause.

First of all, many of the critics say this effort isn’t going to cure ALS. Yes, neither is a national marathon or a gala or any other type of traditional fundraiser (also, talk about a small up-front investment for this campaign). None of those campaigns alone are going to cure this disease. Yet, for some reason, everyone’s griping about the fact that this social media campaign isn’t doing a darn thing for the ALS community. Well, I firmly disagree.

I can’t speak for the ALS community. While I have known of a few individuals who have passed due to this horrendous disease, my expertise primarily lies in Huntington’s disease after years of growing up watching my mum die from this disease and knowing I was at-risk for it. Yes, finding a cure would have been wonderful at that time. I still wish for that everyday. But you know what would have been really nice during those years as a young person affected by this disease? It would have been really nice if people didn’t accuse my mum of being a drunk because her chorea made it impossible for her to control her body. It would have been really nice for the police officers and security guards to understand why she couldn’t explain herself because she didn’t understand what she had done wrong. Even simpler, it would have been really really nice for there to be even a small flash of recognition on someone’s face when you said that the reason your mom was kicking the seat in front of her was due to this thing called Huntington’s disease.

But HD is rare (thank god, this disease should be wished upon absolutely no one), just like ALS. Yet, through a brilliantly devised social media marketing campaign, people can now identify ALS. Not everyone is participating in the donation aspect, but man, if I could get even just one person to make a video about their support for HD research, I would be one happy camper.

What further frustrates me about this disease is people’s constant criticism of the Millennial generation’s use of Facebook and social media. If young people use it to post selfies, it’s frowned upon. And, yet, if young people use it to raise empathy and awareness regarding a debilitating degenerative disease, it’s frowned upon and criticized in articles or Facebook posts of friends who, they themselves, are not doing a damn thing towards curing ALS.

So stop complaining and go through some ice over your head for the sake of ALS/HD/ Parkinson’s/etc research. Go post about it on Facebook and Twitter. Make a donation to the research groups that matter. Do something.

As a member from a rare disease community, I can tell you that many of us could only wish for a fraction of this campaign’s success for our own disease. Many of us understand, though, that a campaign win for ALS is a campaign win for many other degenerative diseases as well. Maybe some of the effects will trickle down to Huntington’s. And even if they don’t, I’m just glad people can recognize ALS’ name because that recognition matters so much to those members of the ALS community.

This campaign was started to raise awareness and bring in donations for ALS organizations. While we should of course emphasize the donation aspect of the challenge, the absence of such does not render the campaign ineffective. Additionally, for those who can’t afford to donate, at least they can aid in the awareness aspect of the campaign.

I want a cure for ALS. I want a cure for Huntington’s disease. But I especially want people to stop acting like they know that this campaign is ineffective because, while it may not lead to a cure tomorrow, it very well can make someone’s life a little easier today. To some, that’s all we really need.
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And if that didn’t convince you, check out this stat from the ALS Foundation:
“The national office has raised a total of $1.35 million from July 29 to August 11 of this year. That’s compared to $22,000 raised during the same time period last year.”

Yes, #slacktivism is a pretty awful thing.

The Power of Young People

A few nights ago, I had the honor of traveling to Southern Delaware for a screening organized by an amazing 18-year-old named Destiny. For weeks, people have asked me why, of all places, Southern Delaware? It’s a great question. Southern Delaware isn’t the first place you’d imagine for a documentary screening. But let me tell you, it was no mistake.

As part of the Official Twitch Tour, I strive to reach every community that has requested a screening. Even more so, when a young person has the drive and motivation to organize it all, I have to go. And that’s how I found myself in Southern Delaware.

The Millennial Generation has a pretty bad rap. Adults tend to want to stereotype us as ego-centric, selfish and addicted to our electronics. I’ve always sought to prove the naysayers wrong because there are some pretty amazing young people out there that often go unnoticed. One of these people is Destiny.

Kristen and Destiny at the screening

Kristen and Destiny at the screening

With every screening, I’m always a little nervous about attendance. Due to budget constraints and timing, it’s always difficult to gage the size. In general, I have considered myself pretty lucky when 20 or 30 people attend. To be honest, I was nervous about Southern Delaware. Google Maps made it look like it was in the middle of nowhere, which it kind of was. The screening took place in a small church in the countryside and I had NO idea how many people were going to attend. I had faith in Destiny though, because I knew she was motivated to teach people about this disease and show her community what it means to be from a Huntington’s disease family.

Let me tell you, Southern Delaware blew everyone’s expectations out of the water. That small church was soon filled with over 70 individuals; the majority of the crowd was young people. The Q&A was filled with engaging questions from both teenagers and adults. Destiny’s family and friends even brought out a full buffet line of brownies, cookies and locally-grown watermelon. There were enough people there, in fact, to tip the scales and push the total number of Twitch screening attendees to just over 700.

Southern Delaware was a brilliant success.

It was a success because a passionate young person wanted to organize. It was a success because a small, but strong community banded together and invited all the friends and family they knew. It was a success because this community was excited to learn. This is why I never turn down a community (if the funds are available. Consider donating!) because a determined community is always worth it.

A huge thank you to Destiny and her family for making my first trip to Delaware such a great experience. I’ve now officially visited all the states on the Eastern Seaboard thanks to y’all. I am so proud of the young people of Southern Delaware for proving all the skeptics utterly wrong. Millennials and young people are always up to proving that they are capable of great things. And on a calm summer night in Greenwood, Delaware, they did just that.

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Young people are amazing!

The sisterhood

Despite meeting over 30 years ago, my mum’s friends are still commemorating her memory by coming out to the first screening of the Twitch Tour in Boston, Massachusetts.

I only hope to form friendships like hers. Thank you to the best friends a mom’s daughter could ever ask for.

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A few of my mum’s friends—Lori and Sue.

 

We’re wicked excited for Boston

Hello our wicked ahwesome Bostonian fans,

I am super excited about returning to my Northern hometown to kick off the 2014 Twitch Screening Tour! If you are interested in attending, here are the details:

When:  July 22 | 5 PM

Where:  L112 in BU School of Medicine Instructional Building

Directions: If you are driving to campus, we would suggest parking in the garage at 710 Albany Street.  In addition, there is some metered parking in the surrounding area. For a map, click here.

There is room for 75 people to attend the screening. Please RSVP to Lauren.Lichten@bmc.org to secure a spot.

Much love,

Kristen

Boston

Want to see Twitch? Here’s your chance!

Hello everyone,

We are in the midst of a crazy planning period for distributing Twitch. From applying to film festivals to writing contracts for online distributors, there’s a lot going on! The bad news? We can’t establish a solid touring plan until Fall of this year, after our first film festival premiere. BUT, there’s always good news too. This summer, we are offering an opportunity to see Twitch in your hometown. If you live on the West Coast, we will be hosting limited screenings during the month of July. If you live on the East Coast, we will be doing the same between August 4 and August 14. (We promise we are coming your way, Midwest states!)

If you want to start the planning process for a screening in your hometown, fill out the below interest forms! Anyone can fill out these forms and we will work with you to hammer out the details.

East Coast Screening Request: Click Me!

West Coast Screening Request: Click Me!

We hope to bring Twitch to a town near you very soon! Thank you for your patience!

Kristen

Thank you, Mum.

Mother’s and Father’s day can often be difficult for Huntington’s disease families. In many cases, there is perpetually a feeling of loss or sadness as many children live through multiple holidays without their loved one there to celebrate with baked goods and excursions through nature. For me, that loved one was my mother.

I became aware of my mum’s diagnosis when I was eleven years old. It didn’t take me very long to realize that she wasn’t going to be around for very long. As the years passed, it hit me that this meant a missing person to celebrate on Mother’s Day. Growing up, I used to think about how for one day every May, for the rest of my life, I would be cursed with the misfortunate of sadness and loss while everyone else spent the day with one of the most amazing women in their lives. That feeling overwhelmed me and I feared the first Mother’s Day without my mum.

That first Mother’s Day came in 2012, a year and three or so months after my mum passed away from complications due to pneumonia.

The day was not what I had expected at all. It took a Mother’s Day without my mother to realize how many female role models I actually had to celebrate in my life, especially my adoptive mother, Betsy, who had actually been a huge influence in my life since I was 10 years old. I had never applied the title of “mother” to her, though, until my biological one was gone.

And then, the epiphanies kept coming. I had three grandmothers (two by blood, one by adoption) and then two more self-proclaimed “abuelas” who decided to invest their time and energy into my life (which included multiple care packages at college. Thank you, Ruth.) All this time, I had spent so much energy being “sad” that my biological mother would be absent from Mother’s Day. While I do dedicate a portion of that special day to her memory, I now understand that this day is nothing to be sad about.

If we look around us, chances are we can find another mother who has had great impact on our lives, someone we also can’t imagine not being there for us. Mother’s Day might be an active celebration for many, but for those of us in Huntington’s disease families, where loss of parents is so common, this day might be one of less in-person activities and more of a day of reflection and admiration for the strength and courage our biological mothers had, and appreciation for every other mother figure in our life who often go unappreciated.

I want to thank all my mothers for everything they have given me, taught me, and shared with me these past 20 years of my life. I am beyond blessed to have a family bigger than I could have ever imagined. Blood ties might determine who your family is, but blood can do nothing to limit the magnitude of your family. And for that, I am thankful.

Happy Mother’s Day.

 

Hola from Santiago!

Hello everyone,

Ever since the Chapel Hill screening, we’ve gone a bit radio silent. Why is that? Well, I just left America for the next 10 weeks to study abroad in Santiago, Chile. The past two weeks have been insane so I decided to take a short break from some of the awesome chaos that Twitch brings into my life. However, that break is going to continue to some extent over the next 10 weeks or so.

Here’s the plan: Over the next 10 weeks, we will be hosting one screening in Santiago (Si, si es chileno o vive en Santiago, tiene la oportunidad ver el documental). During the rest of the time, I will be working on finalizing my distribution plan, as well as sharing the film with those who qualify for the IndieGoGo perk of seeing the film before its official release. We will also field any questions, concerns, or advice for the future of this film via e-mail.

I thank you for your patience during the next few months. It is an exciting time in my life academically and personally. I can’t wait to experience Santiago, explore South America, and get this film out to the world.

Chau,

Kristen