Mission & State

Editorial

Mission & State was a narrative journalism nonprofit that ran from 2013-2014. I wrote profiles and researched for investigative pieces. Here are two of my (very different) profiles from the archive.

Mapping Alzheimer’s

In 1991, Harriman Professor in Neuroscience and co-director of UC Santa Barbara’s Neuroscience Research Institute Dr. Kenneth Kosik (then a neurology professor at Harvard Medical School) made a trip to Colombia to recruit local scientists to conduct neuroscience research in Latin America.

A year after that first visit, Kosik returned to Colombia to give a talk on Alzheimer’s disease at the University of Antioquia’s School of Medicine in Medellín. There, he met neurologist Francisco Lopera. For 10 years, Lopera had been studying a population of almost 5,000 individuals from a large extended family who showed signs of dementia. The symptoms these people experienced were similar to those seen in individuals with Alzheimer’s disease, except for one thing: the young age at which they began showing signs of dementia.

Kosik joined Lopera’s quest to uncover the secrets of the disease in this extended family. Over the years, they came to understand that the dementia was early-onset Alzheimer’s disease and that it was being caused by a single penetrant gene mutation—penetrant meaning that the mutant gene will have some clinical effect: If the individual has the mutation, he or she will get the disease.

A few years later, while sitting in his Harvard office writing a piece on his work in Colombia that would be published as “The Fortune Teller” in The Sciences journal in 1999, Kosik let his mind drift over the possible candidates for the original gene-mutation carrier.

Perhaps it was a Spanish sailor, he wrote, “whose forgettable fling left an indelible genetic memory.” Or maybe it wasn’t a Spaniard at all. Maybe it was a pre-Colombian, “whose own people are now extinct, and whose only legacy is the defective Alzheimer’s gene propagating in retribution among the Spanish usurpers of her land.”

At the time, it seemed like it would be impossible to trace the origin of the gene mutation causing early-onset Alzheimer’s in this particular population. But Kosik was also certain that the gene mutation began with one individual.

Fifteen years later, with the bright, winter sun filtering into his spacious UCSB office and reflecting off the bicycle parked in the middle of the room, Kosik has me imagining the mystery man responsible for the gene mutation. Maybe he was a misfit on the ship that carried him from Spain to the Americas; maybe he didn’t want to be there at all. Maybe he couldn’t sleep for the seasickness, every night climbing onto the upper deck to look up at the moon or the stars. Maybe he was crass and mean. Or maybe he was the captain of the ship.

“It could be absolutely anyone,” says Kosik.

It could have been, but not anymore.

See, Kosik’s lab recently discovered that “the age and geographic origin of [the mutation] are consistent with a single founder dating from the time of the Spanish Conquistadors who began colonizing Colombia during the early 16th century.” To find this specific time and location, the lab went through a process called DNA sequencing, mapping out all three billion nucleotides—the subunits of DNA—in more than 100 people from the village in Colombia where the mutation is rampant.

By looking at patterns in the chunk of DNA surrounding the mutation in each of the 102 individuals, Kosik’s lab was able to determine a number of things about its origin: the similarity between the chunk of DNA in the affected individuals confirmed that they all came from a common ancestor; the changes in the chunk of DNA appeared the same as the changes in DNA of southern Europeans; and the amount of mixture through recombination of the DNA allowed for counting back generations to determine the date of origin—the early 1500s.

Combine the DNA analysis with a brief look at history and we have our conquistador, carrying his gene mutation through 300 years of colonization to current-day Colombia.

This origins project is something of a sideline to the work Kosik’s lab generally focuses on, which is Alzheimer’s disease. He’s working on a variety of research methods seeking ways to modify the disease. The origins project, though not immediately medically significant, contributes to what Kosik says we can call “neuroarchaeology,” or historical genetics. This, he says, is a field that strives “to reconstruct not just human origins but actual population distributions around the world—about how different groups migrated and came to create the distribution of cultures, people and countries that we see in the world today. I think it’s intrinsically interesting,” he continues. “Knowing these distributions of genes helps us to target people that may be of greater risk.”

Kosik’s office looks out on the ocean. Between the blue tint of sea and sky and Kosik’s calm demeanor, the mood in the room feels at ease. There is, however, an urgency in his voice when he talks about Alzheimer’s disease and the research that still needs to be done.

In 2012, an estimated 5.4 million Americans suffered from Alzheimer’s disease. With the baby-boomer generation reaching seniority, this number is expected to rise rapidly in coming years. Currently, there is no treatment to prevent or stop this disease from debilitating its victims and their families.

While Alzheimer’s research labs all over the world are publishing papers almost every single day, Kosik explains that “…most of those findings are related to basic mechanisms that are not necessarily going to result in a drug. They are just deepening our understanding of the disease—which we need.”

He rattles off some of the bigger questions Alzheimer’s research seeks to answer: “What are the underlying causes? What’s the contribution of genes in most people [with the disease]? What are these modifier genes? What are different parts of the pathway that are treatable?”

The list goes on, he says, and the problem is that we don’t have very many answers.

Kosik’s lab is working on multiple projects related to these questions. One of the biggest has to do with modifier genes—genes that modify the expression of another gene. Kosik’s team is looking for any such genes that may be working in conjunction with the mutation that causes early-onset Alzheimer’s in the 5,000 individuals in Medellín.

In studying this extended Colombian family, Kosik and other researchers were intrigued by the fact that symptoms of this particular form of Alzheimer’s started showing up in as early as 30 years of age, while others would not feel its effect until their late 50s.

An explanation for this, says Kosik, could be a modifier gene that controls when the mutation takes hold. If Kosik’s team could find such a gene, they have a chance at developing a drug that could delay the onset not only of the form of Alzheimer’s affecting the Colombian family, but also of the more common form of Alzheimer’s disease that today affects millions around the world.

The DNA sequencing that led to the origins discovery is a first step in the search for the potential modifier gene. It is a slow process, Kosik says, but there are small victories along the way, and finding the original carrier of the gene mutation is one of them.

 

 

Beyond Time

Vanessa Isaac considers herself shy, but you wouldn’t know it if you were to see her enter a room. Her exuberance and confidence fill the air, push up against you so you’re forced to notice her, sleek and elegant in a long black cotton dress and a short jean jacket. Her black hair falls loose and wavy over her shoulder blades, weightless, and if she knows you, even if she has met you only once, she will smile warmly when she sees you and extend her arms, offering a comfortable hug.

You wouldn’t guess she was shy if you were to attend one of her Brazilian dance classes. “Passion!” she yells. “You can’t just do the movements, you have to perform them, put your passion into them!” She demonstrates this with ease. She dances and her entire body performs. 

Neither would you say Vanessa Isaac is shy if you searched her on Google, read her blog, or browsed her website. You would learn things she wouldn’t tell you herself, not even in an interview about her work and her life. For example, in a Google search, you would find that Vanessa has been featured on numerous news programs and in innumerable magazines: CNN Headline News, Shape, Fitness, and Dance Spirit, to name a few. You would learn that she has made two Brazilian dance DVD’s and many more shorter youtube videos.

You wouldn’t know it, but if you sat down and talked with Vanessa Isaac, you would understand what she means when she describes herself as shy. You might say she is flirtatiously shy. Or you might call her an introverted performer. “It’s different, you know. Being in a room full of people…” Her voice trails off and her face finishes her sentence, bashful and slightly embarrassed. It lights up again to continue: “But performing, singing, dancing, acting, that is different.”

Her voice is rich and full, her Brazilian accent dancing softly around her words. Her dark eyes are warm; you can see her sincerity settled in them. We talk about language a bit, and this is one of the things she misses about living in Brazil. “To speak the language, it’s part of who you are, part of your history,” she tells me, adding that she still has trouble with English, even after living here for 18 years. She looks taken aback when she hears herself say “18 years” and her eyes look into mine, asking “God, has it really been that long?”

One of these days, Vanessa will live half the year in Brazil and the other half in Santa Barbara. She frequently assures me that she loves it here, loves Santa Barbara, but in Brazil, she says, it’s different. “In Brazil, you live at the beach.” I laugh at first, misunderstanding her. “We live at the beach here,” I start, and she shakes her head, smiling. “Yes,” she says, “but it’s different. In Brazil, you live at the beach. The ocean’s warmer, the sands are whiter. You sit there and drink wine and drink beer and talk. You live there. Last time I was in Brazil for 35 days, I was on the beach every single day from 9 until 4. Every single day.”

She shows me a picture to demonstrate, and even Santa Monica’s warmest summer day couldn’t compete with the amount of people on that beach. What I can see of the sand looks powdery white, but the majority of the picture is dotted with bright colors, big round beach umbrellas touching big round beach umbrellas.

“I miss it,” she tells me, but there is no nostalgia in her voice or on her face. She is upbeat and buoyant and she begins to laugh. “I’m a spring and summer person. This dark at 5 o’clock, I can’t take it! Are you kidding me? That’s lunch at 5 o’clock!”

* * *

Immediately after meeting with Vanessa at a coffee shop on the Mesa, I hurried home, high on sweet chai tea and the almost-full moon and the stories bubbling and bouncing around in my head. I sat down at my computer and started to write, soon realizing that I wanted to see what the internet had to say about Vanessa Isaac. I typed her name into Google and after seeing that the first three links were to her website, I clicked on the images. My jaw dropped and I laughed aloud and said to nobody: “No way.”

When I was talking to Vanessa, she briefly mentioned some Brazilian dance DVD’s she had made before moving onto another topic. When I heard the words “dance DVD,” my mind flashed to a fleeting memory of the only dance DVD I’d ever used. It was some sort of Samba workout video that my mom bought and never used, and sometimes, when I didn’t feel like running or I wanted the convenience of a dance class in my living room, I put on these silly bright blue sheer pants and matching top and popped the video into the DVD player. This is the memory that landed and took off in the half second after she mentioned her videos, and I laughed to myself mentally, thinking, “Wouldn’t it be funny if that was Vanessa’s video I used to dance to?” brushing the thought off as quickly and easily as Vanessa brushes off her accomplishments, and I moved my thoughts along with hers.

Google images was quick to show me that yes, it was Vanessa’s video that I used to dance to on my living room floor. There it was, that brightly colored DVD case with “Samba Party, Workout 1” sprawled across the top. And there was Vanessa, smiling as big as she does in person. When I later related this tale to Vanessa, she laughed during the entire story, and when I finished, her laughter trailed off and she said, “That’s too cool.”

* * *

The pear trees lining Canon Perdido were in full bloom when I went to Vanessa’s Brazilian dance class. The sidewalk outside the studio was blotted white with the tiny powdery petals. You could tell which cars had been parked for more than a couple of hours, soft white covering the hoods like snow, trickling down the windshields. The studio was bright and clean, leftover Valentine’s Day decorations hanging from the ceiling. When Vanessa walked in, I watched stress melt off her face as she smiled, seeing her dancers. She wore a teal blue dance top and her dark hair was tied back in a low pony tail. She floated around the room busy with chatter, dropping hello’s and hugs and smiles with a sweet easy energy.

Once class started, she was all business. In the studio, Vanessa is fierce.

She starts her classes with a standing warm-up, the music loud. You can feel the whole room expand as bodies breathe and loosen and drape and stretch. You can’t hear the words that Vanessa says, but you know to move when you hear the sound of her voice flowing between the notes of the music. The timbre of her voice matches the music, both rich and smooth and sultry.

Once we are warmed up, Vanessa leads a floor workout, and as she lifts and lowers her own body with ease, the rest of the room breathes heavily and grunts and stops briefly for breaks. After this, we are ready to dance.

The music is so loud you can feel it in your body and you have to be quick to catch on to the choreography at the beginning. It is fast and we watch Vanessa and follow along, constantly moving. She wants to get the choreography in our bodies even before it locks itself in our minds. Vanessa likes to try out new choreography in her classes. “Class is like a laboratory. You get to work out ideas and the dancers get to experiment with movement,” she later tells me. Vanessa’s energy never dwindles. She dances and teaches one hundred percent, the entire two hour class; she is never still.

Vanessa shouts the half-numbered half-worded counts over the loud music, which varies from Brazilian funk to Bossa Nova. “One-two-de de-TAH,” she might yell, so we know that the first two counts are preparation, the third count is double time, and the fourth count is presentation.

The last class I went to was just before the Vernal Equinox and Vanessa’s birthday. She taught us a series of choreography and played two different songs, one bursting with energy and celebration and the other a sweet Bossa Nova cover of Frank Sinatra’s “The Way You Look Tonight.” She told us to embody the music, to take the same steps and make them fit whichever song was playing. The choreography matched the energetic song perfectly, so she demonstrated what she meant with the Sinatra song, liquifying the celebratory dance steps with her body, limbs fluidly flowing from a strong, burning core. She took her fast upbeat choreography and melted it down, molding it into something sweet, something you would wrap up and give to a lover. Pausing the Sinatra song, she dance-walked her way to the front of the room, moving sensually and blissfully as if petals were falling from her hair to the floor, leaving a trail of color spilling from her joy. She explained, smiling fully, “It’s almost Spring, that’s why I’m feeling so romantic.” There didn’t seem to be a dancer in the room who didn’t catch her mood; it came off her like pollen.

Vanessa stops the music when she wants to go over a piece of choreography. “You are dancers,” she tells us. “You are performers. You have to perform, you have to find that sweet spot, the place all artists want to find, the place where time does not exist.” Watching Vanessa dance, you can see that everything she does is in pursuit of that “sweet spot.”

She has a busier schedule than most people I know: right now, she is choreographing for a film, a fitness video, her classes, and the Summer Solstice parade; she teaches private dance and fitness classes; she attends meetings upon meetings for various projects she is working on; she is writing a book; she answers an endless slew of emails daily; and she updates and manages the HipBrazil Facebook page and website. Despite all of this, Vanessa never loses sight of the goal. The very reason Vanessa fills her schedule full to the brim is to find that place where time does not exist and to share it with others.

* * *

Vanessa was born in a tiny town called Anápolis, a city she tells me is “in the middle of nowhere” two hours from the capital city of Brazil. When she talks about her childhood, there is only a hint of nostalgia in her eyes. However, when she speaks of her grandmother, the nostalgia multiplies and blends with beautiful memories that she doesn’t speak, hundreds of them hidden behind her humbled voice. “My grandmother was a huge influence on my life. I was always closest to her. She left her home when my grandpa died and came to live with my mom when I was born,” she says, her voice warm and loving.

When Vanessa moved to the United States in 1995, the hardest part was leaving her grandmother. “She was getting old,” she tells me, and her smile leaves and her face drops. She quickly changes the subject, talking about the support she received from her parents. She had just finished at the University where she studied journalism and she wanted to learn English. “I had to experience it to learn. I just finished college and I wanted to go. I just wanted to go. To go and get a job was never an option. It was always to go and do art and change the world and do something different,” she tells me, and I know by the confidence in her voice that she feels she has succeeded; she has found her niche in the art world and she is doing what she loves and she is impacting the people around her.

Vanessa’s primary focus is dance, but she is also a singer and a writer and has had experience in theater. When I ask her to describe what she considers her career, Vanessa thinks for a minute and says, “It’s very hard to define. My passion really is to use art to share my culture, share humanity. Right now I only teach Brazilian dance Sundays and Thursdays and my work is writing a book. But I’m also making fitness videos. I have so many things I cannot define myself. I’m researching Brazilian culture. My book is about Brazilian history and art and culture. It’s almost a memoir but also a history of the arts in Brazil so I have to get the facts right. When it comes to history, you have to be careful with how you portray it.”

She tells me that she goes in phases with her art. “Sometimes all I want is to sing. And then all I want is to dance.” Regardless of which art form she is using, though, she is always striving to reach “that magical place,” something that she talked about in the first dance class I took with her. When I later ask her about this, her face lights up and she tells me it’s all about being in the moment. She tells me, “You have to be prepared and you have to do your work. There is no formula to reach it. The only formula is to keep doing it. And that’s why it’s so magical because you don’t know when it’s going to come.”

* * *

Three months after moving to Santa Barbara, Vanessa met her husband, Randy Tico. He is a bassist, and Vanessa tells me they need a bigger house to fit all of his instruments. When I’m at her house, though, I don’t notice it until she points them out. The instruments fit in as if they were part of the house’s infrastructure. I walk through the halls and all I really notice is the abundance of color and light. When I comment on how cheery and colorful it is Vanessa laughs and looks at me confidingly, saying, “I know, it’s like Brazil.” The house is quaint and old with dark wooden floors that glow softly from the daylight filtering in through sheer curtains.

When I visit Vanessa at her house she is wearing a pink fuchsia cotton dress that falls to her bare feet, brushes against the clean wood floor. She isn’t wearing makeup and her hair is tied back in a neat ponytail, showing off the colorful earrings that dangle and touch her collarbone. She only has an hour at home; she taught a private fitness class earlier that morning and she has meetings immediately after her home-time is up. And home-time isn’t exactly free time. Vanessa works on the computer at various tasks: email and facebook managing, choreographing, choosing music for a video she’s part of. When she begins searching for music she brings out a black poster board covered in pictures and her handwriting. “Sometimes I create a storyboard before I choreograph,” she tells me, and I look over the one she brings out. There are pictures of dancers and sunsets and pop culture references, around and above and below which are handwritten ideas. She comes up with themes and images that she wants to evoke and chooses her music based on that. She looks focused but comfortable as she walks back and forth between the storyboard and her computer where she has both iTunes and YouTube open. She plays song after song and tells me that she is picking a few different songs to show her husband who will then, based on her ideas and the themes of the music she has selected, compose his own music. She will later choreograph to this music and the video will be thoroughly in progress. For now, Vanessa has multiple nascent projects, ideas swimming around in her head and on story boards and on the pages of her “crazy book of ideas, dreams and thoughts,” a very large beautifully bound notebook where she finds sanity in organizing her mind.

Vanessa pauses in her work and we chat for a while. We talk about the art that moves us; the authors and the musicians who make us feel that time does not exist. We talk about our own art and Vanessa professes an egalitarian view toward her dancing and writing and singing and acting, as long as they bring her and her audience to that special place. But when I tell her that for me, music and dance are the most direct and brilliant ways to access that sweet spot, her excitement gives her away. She is surprised and leans closer, her smile growing as she asks, “Really?” with emphasis and then leans back, happy. “That’s great,” she says, and I can see that she really means it, and that maybe dance and music are her preferred avenues as well, and when I think of her dancing, I know that they are.

I see her, not lost in the music, but carried by the music, connected to it in a way that connects her audience to it as well, through her body. She is both fluid and strong, her face expressing nothing but joy and the essence of the music, and her hips hit the beats so fast that you wonder if they’re connected to her body or simply controlled by the drums. You might see stress on her face when she first walks into the studio, or when she chooses which charity emails to respond to, but when you see Vanessa Isaac dance, time is the last thing on anyone’s mind.