Scientifically gifted, agile and charmingly quirky, Freja Ekman knows firsthand how it feels to win the genetic lottery. But UC Berkeley’s top graduating senior is also painfully aware of how a single gene mutation can drastically alter the trajectory of one’s life.
As a preteen, she witnessed her oldest brother Felix – who has epilepsy, a hip disease and high-functioning autism – being teased by his high school classmates. Until then, she had thought, perhaps naively, that people would “celebrate his differences, not make fun of them.”
“It made me sad because he thought they were his friends, but they were laughing at him, not with him,” says Ekman, who was born in Germany, but raised mostly in La Jolla, California. “He always assumes the best in people. He’s the best friend you could ever have.”
Ekman, 21, a graduate in chemical biology with a near-perfect GPA of 3.99, is this year’s winner of the coveted University Medal. As UC Berkeley’s top graduating senior, she will receive $2,500 and deliver a speech to thousands of her peers at a campus-wide commencement ceremony at California Memorial Stadium this Saturday, May 12.
She is fluent in Swedish and Norwegian, and conversant in Spanish and German, but will, of course, deliver her remarks in English. Her athletic pursuits include marathon running, squash, intramural basketball and long-distance bicycle touring.
In fact, Ekman was just getting back from a long run a couple of weeks ago when she saw that she had missed a call from law professor Eric Rakowski, chair of the prizes committee that selects the University Medalist. Sweaty and nervous, she called him back.
“I’ve made several calls today, but yours was the easiest one to make,” she recalls Rakowski telling her. “You have won the University Medal.”
“For the rest of the day I couldn’t stop smiling,” says Ekman, whose recreational activities include goofing around with her best friends in animal-themed onesies.
Among other research breakthroughs, Ekman has used CRISPR-Cas9 gene engineering technology to treat Huntington’s disease and Amyotrophic Lateral Sclerosis (ALS) in mice.
She has also published scientific papers with such luminaries as CRISPR inventor Jennifer Doudna, a UC Berkeley professor of biochemistry and molecular biology, and David Schaffer, a UC Berkeley professor of chemical and biomolecular engineering.
“First authorship on one publication and authorship on three additional publications is arguably sufficient for a Ph.D. at Berkeley, (but it’s) an incredible feat for an undergraduate,” wrote Schaffer in his letter recommending Ekman for the University Medal.
“Freja is an extremely gifted young scientist in the top 1 percent of all undergraduate students who I have mentored in my 19 years here,” he wrote.
Combating stigma of autism
As an advocate for neurodiversity, Ekman argues that people with neurological and developmental differences, like autism, would fare better if the focus was on destigmatizing them rather than “fixing them.”
“I use gene engineering to target neurodegenerative disorders. But I also believe there are non-lethal genetic disorders that should be treated socially by taking away their stigma,” Ekman says.
Ekman was born in 1996 to Lars and Siri Ekman in Erlangen, a small city in southern Germany. She is the youngest of four siblings, including an older half-sister, Helen, and an older brother, Kjell-Ferdinand, a UC Berkeley graduate in engineering who works at Apple.
Back then, her Swedish father was a surgeon working in the biomedical industry. Her Norwegian mother, an economist-turned-artist, stayed home to care for Felix who, despite his developmental and learning challenges, thrived under his family’s affection.
Ekman recalls an idyllic, free-range childhood of summers spent with grandparents in the Norwegian countryside.
“There was only one TV channel, so we played cards in my mom’s childhood living room, or we went out in the woods and fields behind the house,” Ekman says. “I would pick small bouquets of flowers and my grandmother would put them all around the house.”
In 2001, Lars Ekman got a job in La Jolla, and the family moved to the affluent ocean-side enclave north of San Diego. It wasn’t until middle school that Ekman saw how Felix’s open and childlike demeanor made him an easy mark for bullies, and it saddened her deeply.
“Seeing him treated that way really got to me because he sees the best in everyone and they were using his trusting nature against him,” she says. “Everyone deserves to be treated with dignity, and not be judged for their differences. Everyone deserves the opportunity to shine.”
In high school, she landed a challenging internship at the Scripps Research Institute in La Jolla, where she used a genome-editing strategy known as zinc-finger recombinase to insert a particular gene in the genome of mammalian cells.
In 2014, she was accepted to both UCLA and UC Berkeley. Even though she had long dreamed of attending UCLA, a visit to Berkeley on Cal Day changed her mind.
“The dance team and Cal Band performed at the spirit rally on Sproul at noon. It was a perfect Berkeley day,” she says. “I remember the enthusiasm that everyone showed for not only their academic pursuits, but also Cal pride, and I thought, ‘Wow, people are really excited to be here.’”
But Ekman had a tough time meeting her self-imposed goals to excel at the start of her freshman year. Plus, she missed her close-knit circle of hometown friends, including her high school boyfriend, who had opted to go to UC Santa Barbara.
“I hit rock bottom,” says Ekman. “I felt as though I hadn’t made any true friends, and became obsessed with my grades and getting an internship. I had lost sight of why I came to Berkeley.”
Relief came in the form of her dorm floor mate, Masami, who drew Ekman out of her dark place and remains her roommate and best friend today.
“She taught me to be proud of who I was rather than striving to fulfill the expectations set by the competition of Berkeley,” she says. “She encouraged me to see the positive side of life and got me into running. We ran the San Francisco marathon and took a bike trip to Monterey and I really started to feel as though I belonged.”
With her confidence boosted, Ekman took leadership positions in the campus chapter of the Global Health Brigades and traveled to rural Honduras where she helped villagers deal with water pollution, sewage and chronic illness.
In her sophomore year, she joined the UC Berkeley chapter of Best Buddies, where she and other students met regularly with people with intellectual and developmental disabilities. They went on outings such as bowling and picnics and even put on a talent show.
That same year, Ekman landed an undergraduate research position in Schaffer’s lab where she used CRISPR-Cas9-based genome-editing techniques in mice to treat ALS, a progressive disease that destroys motor neurons, and Huntington’s disease, a fatal genetic disorder that destroys brain cells.
The following summer, she interned at the Philadelphia-based pharmaceutical startup Spark Therapeutics, where the techniques she created were key to an experimental gene therapy targeting hemophilia.
All these accomplishments earned her a Gates Cambridge Scholarship, which will take her to the University of Cambridge in England in October to embark on a graduate degree in translational biomedical research.
But all her successes, she says, pale in comparison to what Felix has overcome. He has become very much the hero of her story, and she hopes he is able to see her receive the University Medal.
“Despite his challenges, he has accomplished incredible things, and even hiked down the entire California coast,” she marvels. “He doesn’t let physical boundaries hold back his own development and progress.”
And neither will she.