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Wheelchairs aren’t the biggest obstacle

Alexandra Tzilivaki

Alexandra Tzilivaki
Image Credit: Christos Tsoumplekas

Science and academia benefit from talent from all over the world, with people contributing not only expertise on specific subjects, but also diverse experiences and life stories. European academic and research institutions have expressly pledged to support diversity in research. Nevertheless, members of underrepresented groups often face special challenges along the path to an academic career. Molecular biologist and brain researcher Alexandra Tzilivaki had to overcome huge obstacles to be able to work in Berlin. 

Alexandra Tzilivaki was delighted to be approved for a doctoral fellowship at the Einstein Center for Neurosciences Berlin (ECN), one of Germany’s largest neurosciences networks, in 2017. A junior researcher from Greece, Tzilivaki immediately began planning her move to Berlin from Heraklion, on the island of Greece, where she had completed a master’s degree in molecular biology and biomedicine. Within the NeuroCure cluster of excellence, she planned to continue the research she had started in Greece on specific nerve cells in mammalian brains – inhibitory interneurons – and how they affect learning and memory and write her dissertation on this topic. 

Using computer models to study nerve cells 

Moving to a different country in this way, saying goodbye to a person’s familiar environment and to family and friends, is a common part of an academic career. But in Tzilivaki’s case, it is a very special step anyway. Tzilivaki is an excellent scientist who uses computer models to study how nerve cells work. She was diagnosed with spinal muscular atrophy (SMA) in early childhood. Tzilivaki has been in a wheelchair since then, and her hand and head movements are limited. She has taken her condition as a challenge: “Understanding the meaning behind terms like ‘cells,’ ‘neurons,’ ‘functions,’ and ‘proteins’ always fascinated me,” she explains. “As far back as I can remember, it always motivated me to become a scientist and overcome any and all possible obstacles along the way.” 

After receiving the positive answer from Berlin, Tzilivaki, then 24, made all the necessary arrangements, gave notice on her apartment, packed her things, and held a going-away party for friends. But then things started to go wrong. She got a call from Berlin: Unfortunately, she wouldn’t be able to come to Berlin in October as scheduled. There were “some small obstacles.” 

Going abroad for science 

“It was a shock,” Tzilivaki recalls. It was clear to her that if she was to have a top-level scientific career, it was important to show that she was mobile, independent, and flexible, and that she could collaborate effectively with different working groups in different places. “Science isn’t a job. It’s a vocation,” she says. She was willing to fight for her dream and undertake a years-long odyssey. And a good thing, too, since it would take four and a half years in all for her to get to Berlin. 

Linda Faye Tidwell followed along from the start as well. Tidwell is responsible for public relations at the Einstein Center for Neurosciences Berlin and the NeuroCure Cluster of Excellence. “There were a lot of things we had to arrange, and everyone at the office had a job to do,” she says, explaining the wealth of administrative challenges that employees at the ECN had to pitch in to resolve in order to bring Tzilivaki to Berlin. “At the beginning, we didn't even know where to start or where to get information and support.” 

E-mails, applications, forms 

There were no blueprints from similar cases – bringing a fellowship recipient who uses a wheelchair, who requires help and care, to Germany from a different country. Who would assume which costs? Which institutions and insurers were responsible for what? What laws and regulations applied? All of that information had to be gathered, a lengthy and painstaking process. It also turned out to be near impossible to find an affordable wheelchair-accessible apartment in Berlin. In 2018, Tzilivaki met with her mentor and future supervisor, Professor Dietmar Schmitz, the spokesperson for the NeuroCure Cluster of Excellence at Charité – Universitätsmedizin. He said, “Alexandra, there are no problems, there are only challenges.” Giving up was not an option. 

Step by step, Tzilivaki and the teams at ECN and NeuroCure overcame all those challenges as the months dragged into years. They wrote countless e-mails, filled out applications and other forms, and talked with long-term care insurers, social insurers, and health insurers and with offices and government agencies. The neuroscientist officially started her doctoral fellowship at Charité in 2018 – but she did so from Greece, in her old working group at the university in Heraklion. That was because before she could receive the long-term care assistance in Germany that she would need for her work, she would have to pay into the German long-term care insurance system for two years as an employee. That seemed like an insurmountable obstacle for someone who requires care, is from a different country, and wants to start a new job in Germany. “This isn’t mainly a German problem, but a European one. Right now, in 2024, there is still no European strategy for mobility for researchers with health challenges or disabilities,” Tzilivaki says. “We’re a minority within a minority.” 

Berlin at last 

The researcher stuck with it, and finally, at long last, she was able to move to Berlin in 2021 and continue her work at Schmitz’s lab. “’I remember how happy I was to arrive at the airport in Berlin,” she recalls. That was the moment when she knew the four and a half years of work had all been worthwhile. 

Now she can focus completely on her research, constructing detailed biophysical models of individual neurons and large neural networks. She uses them to study exactly how inhibitory interneurons work. “The brain is the most multifaceted organ in the body, and there’s so much we still haven’t studied. I hope my work will contribute many new insights into important functions,” she explains. Berlin is the perfect setting for this, Tzilivaki says. “There are wonderful scientists and researchers working here within the cluster and at ECN. It’s an open, interdisciplinary, motivated, and successful community.” She is due to complete her dissertation soon and plans to continue living and doing research in Berlin afterward. She feels comfortable here now, in the research setting and beyond: “I feel safe, and I don't feel different from others. The city has a multicultural vibe. And that’s a big advantage over other global megacities.” 

Read or listen to the podcast of a detailed interview with Alexandra Tzilivaki.