“Oxygen” Is the Story of Dancers Living with Cystic Fibrosis

Katarina Premfors’s work with Scuola di Sci Monte Bianco and Courmayeur la Danza aims to raise awareness for Cystic Fibrosis, a condition that impacts roughly 100,000 people worldwide.

“There is no known cure and only half of those with the disease live to the age of 40,” explains photographer Katarina Premfors. She continues, “the symptoms of Cystic Fibrosis affect the respiratory system and the digestive system. Those who have it often find it very difficult to breathe.” Cystic Fibrosis is a rare disease, and the impact it has on those who are diagnosed is heartbreaking. But because it’s so uncommon, many people may not be aware of it and the impact it has on people who have it. That’s why the work Premfors does is so important – especially in a time when those with respiratory conditions are at great risk due to COVID-19.

Be sure to also check out the coverage of this story on TWIP

Understanding Cystic Fibrosis

Cystic Fibrosis (CF) mainly impacts Caucasians. It’s a genetic disease and both parents must be carriers of an abnormal gene, which they pass to their child, resulting in the child being born with CF. The symptoms of the disease are the result of a fault in a CFTR protein. It impacts the body and cells that produce both mucus and sweat.

CF results in a thick mucus that’s produced in the lungs (as well as other organs in the body). Because it’s so thick, it leads to blockages that clog airways, making it difficult to breathe, and traps germs that lead to infections.

“Oxygen”

Premfors’s relationship with the project was born out of her need to give back to important causes. “I do a few charitable projects every year and my husband’s boss, Federica in the UAE, was aware of my passion for helping people and organizations through my photography.”

Frederica is from the small Alpine village of Courmayeur. Collaborating with the Scuola di sci Monte Bianco and Courmayeur la Danza, she was advising on a calendar shoot with the intention of raising funds for the Foundation of Cystic Fibrosis in Italy.

It was through Federica that Premfors was introduced to a young ski instructor at the Scuola di sci Monte Bianco, Eduard Hesemberger. Hesemberger also lives with CF. Alongside him was Daniela Tricerri, artistic Director of Courmayeur in Danza – between the pair of them, they created the idea of “Oxygen,” which would be the main theme of the shoot.

“Daniela has known Edoardo since he was a child and knows all the difficulties he faces every day to try and lead a normal life,” says Premfors. She continues, “after discussions with the director of the ski school, for which Edoardo works, they decided to help raise awareness through their work – dance and skiing. They proposed the idea of a calendar to the Cystic Fibrosis Association who were immediately enthusiastic about it.”

“The idea of Oxygen was to raise funds, support and awareness for the Foundation for Research on Cystic Fibrosis (FFC) through the twelve choreographed dances designed by Loredana Avagliano, Elisabetta Seratoni and Oliviero Bifulco. “

“The dance body consisted of 24 dancers, including the best talents selected during the last edition of Courmayeur in Dance in 2018. The ballerinas in the images of the calendar are the dancers of Courmayeur in Danza who distinguished themselves for merit and ability in the 2018 edition of the stage, together with some of the instructors of the Mont Blanc Ski School and the Courmayeur Alpine Guides.”

We asked Premfors why the theme was communicated through dance. “Shooting dancers at altitude in the mountains was in direct correlation to oxygen and the difficulty of breathing.” She adds, “the calendar and choreography show energy, freedom of movement, playing, exploring new boundaries, imagination, the dedication to one’s passions. In short, that breath of fresh air that makes our days precious.”

It’s in this moment that Premfors is reminded of something Hesemberger had said to her. “Eduardor said to me, ‘In addition to the medicines, I had and still have to do respiratory physiotherapy to try to get the dense phlegm that torments me so much out of the lungs. It is precisely in this regard that I began at the tender age of two and a half years to go skiing. The clear mountain air and the fatigue of sport have always been close friends with me.’”

Approaching the Shoot

Working at high altitudes – 3,466 meters to be precise – and creating imagery for such an important cause demands preparation. You can’t go into such a shoot lightly, so we asked Performs what steps were taken leading up to the shoot in regards to designing the aesthetic of the calendar.

“We had discussed the shoot for eight months. I have these big crazy ideas and we had been emailing for many months back and forth. I had researched glacial lakes and other locations. In the end it comes down to what is practical for the dancers, who were training for their summer show. We had to consider access, safety and the time it takes them away from their rigorous schedule. It boiled down to a three-day shoot and two days of recce with much of it spent getting to and from the location. Some locations had been scouted beforehand and we picked from those.”

“I traveled with minimal camera gear. So that meant the GFX 50s, two lenses, a laptop, tripod and all accessories plus a backup system. We came straight from the scorching 50 Celsius heat of Dubai, UAE to standing on a glacier in biting wind. It was refreshing to put it mildly!”

Meeting the Dancers with Cystic Fibrosis

It was during the recreational days that Permfors was able to get closer to the dancers. It was while the dancers practiced that she began the relationship between photographer and subject.

“What we had not discussed when planning the shoot, was me shooting behind the scenes. This is where I knew I could get some of the best shots. The practice halls are where the girls are at home, at ease.”

“I would wander around while they danced and shot from above. I shot little things, like when they were putting on their ballet shoes. These images were eventually included in the calendar, as I hoped they would be.”

Shooting “Oxygen”

After getting to know her dancers and the rest of the crew, it was time to head up to the mountains and make the images for the calendar. Because this wasn’t a regular shoot, and instead had the main purpose of raising awareness and funds for an important cause, we were interested to know if this added extra pressure for Premfors. “I think I put pressure on myself no matter what the work is. But I really try and listen to what message will be conveyed and also I want to do such a good job so the images will be emotive and people would buy lots and lots of calendars raising lots of money,” she explains.

As well as managing the pressure of doing the cause justice, she also had to adapt to working in such cold temperatures. She talks us through some of the considerations and worries that come with shooting in such a cold climate.

“I have done quite a few shoots in cold climates but it was my first time with the GFX50s so I was a little concerned about battery life and how the camera would perform. In the end it was my toes that got the better of me. I had underestimated how cold affects your body and how it slows your speech and blurs your thoughts.”

“I was hyper aware that when we shot on the glacier that we would shoot quickly because for the dancers it was too cold, especially being exposed in that wind. Shooting the dancers on the glacier was quite tricky. They slipped in the snow. It was difficult for them to keep balance, especially in their ballet shoes. To help them, we put plastic underneath them so they would feel more steady, and so they wouldn’t destroy their shoes.”

Because everyone was working for a good cause, they were able to tap into energy that allowed them to work to the best of their abilities, even if the weather was pushing them to their limits. Permfors notes that the dancers showed grit and discipline, staying focused on the shoot until it was perfect.

Aside from keeping the dancers warm and stable, Premfors also encountered difficulties while making the images.

“The light was so strong and reflective in the sunlight and it was hard to see what I was shooting. There were lots of people traversing the glacier in the background. In the end I got this photograph of the black swan looking proud and beautiful. Maybe not the shot I had visualized but she has this little ‘Mona Lisa’ smile on her lips, and no one would be the wiser to all the chaos around her. I was also aware, I could not run around on the glacier as there are crevices and I should have been roped into others, but it wasn’t feasible, so I tried to stay on the path.”

Using the Fujifilm GFX 50s

Premfors started creating photographs from the age of 12. In the analog era, she would mostly use Fujifilm cameras. When the Fujifilm GFX 50s was released in 2017, she described it as the “perfect fit” for her photographic style and approach.

When we think of printing images, especially to the commercial standards synonymous with producing calendars, a camera that can recreate plenty of detail is essential. That’s why it was an easy decision to pack the GFX 50s for photographing “Oxygen.” She paired the medium format camera with the Fujifilm GF 32-64mm f4 R LM WR. She explained that combination made her feel balanced, something which was crucial while working on top of a glacier, where she wanted to feel safe and balanced.

Reflecting on Oxygen and Cystic Fibrosis

A shoot that’s filled with a variety of challenges and fueled by the desire to help those in need can teach many things to a photographer. For Premfors, the integration of a hard working team with a shared goal of helping the Cystic Fibrosis Foundation allowed her to reflect on the importance of community. “I have thought a lot about the community and how much healthier it would be to live in a place where everyone knows you and genuinely care and look after one another.”

We asked her to open up about how she felt about the images she created and the impact she hopes they will have. “A few of the scenes I wish I could redo. To wait for the right weather, go farther onto the glacier, closer to the mountains, for example. But I do hope people would buy lots of calendars and support the Cystic Fibrosis Foundation and also connect emotively to the photographs and see these otherworldly creatures that ballerinas are.”

Speaking candidly, Premfors tells us how she wants to use her passion for photography to tell stories that will inspire action, and create change and a stronger global community.

“Raising money through photography is really important to me and I feel I can use my talent to help. If people can connect and, in this instance, buy the calendar and donate money to the Cystic Fibrosis Foundation, then that is fantastic, and a job well done.”

In closing, she again reflects on the words she read from Eduardo Hesemberger. He told her:

“To be honest I don’t think Cystic Fibrosis has shaped my life outlook, because Cystic Fibrosis IS my life. When you have a genetic disease from birth, the things, even the strangest ones, that you are forced to do are things that are part of normalcy, especially as a child. It is also true that growing up you ask questions, but they are dangerous questions, because they can easily lead you to believe that illness is an injustice, and therefore I have always preferred to avoid them.

I try to live my life to the fullest and in a way that is not too different from that of my peers, except for the things that I myself want to be different; I do not always succeed but I have also come to terms with myself when I fail in something, without losing heart and always going forward.”

Editor’s Note: This is a sponsored blog post from Fujifilm.

About FUJIFILM North America Corporation (Fujifilm)

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