Scientists and Parents Driven by Love and Hope: Drs. Soo and Jae Lee
At the FOXG1 Research Center, groundbreaking work is being done every day by a dedicated team of scientists. But behind every lab coat is a personal story—a journey that connects their work to the FOXG1 community. In this new monthly series, we’re introducing the incredible individuals who make up our research team. Through their personal stories, we hope to bring our supporters, families, and community closer to the heart of our mission.
We begin with two of our most devoted scientists and the Principal Investigators of the FOXG1 Research Foundation, Drs. Soo and Jae Lee, PhDs. A husband-and-wife team whose research is driven by the love they have for their daughter, Yuna, who was diagnosed with FOXG1 syndrome.
A Journey that Changed Everything
Soo and Jae Lee are more than just scientists—they’re parents on an extraordinary journey. Their work is driven by their love for their daughter Yuna, who was diagnosed with FOXG1 syndrome, and their mission is to help not only her but every family touched by this rare genetic disorder.
In 2010, on a rare snowy day in Houston, Texas, Yuna Lee was born. Her parents named her after the snow that marked her arrival, with Yuna meaning “Snow Girl” in an old Korean dialect. From the very beginning, Yuna brought joy to their lives, but as the months passed, they began to notice challenges. Yuna struggled with seizures, infections, and delays in development that left her parents searching for answers.
That answer finally came when Yuna turned two. A doctor’s email suggested Yuna might have a mutation in the FOXG1 gene, a gene that plays a critical role in brain development. For most parents, this diagnosis would have been unfamiliar and overwhelming. But for Soo Lee, it hit very close to home. As a scientist studying brain development, she had been working with the very gene that was now affecting her own daughter.
“When I saw the email, I froze,” Soo remembers. “I knew what FOXG1 was and what it meant. It was heartbreaking.”
But heartbreak quickly turned into determination. From that moment on, Soo and her husband Jae Lee devoted their careers to studying FOXG1 syndrome, hoping to find answers—not just for Yuna, but for every child living with this disorder.
A Life Dedicated to FOXG1 Research
Soo and Jae Lee both hold prestigious positions as scientists at the University at Buffalo, but their most important title is that of parents. Before Yuna’s diagnosis, Soo’s research focused on understanding how motor neurons develop. But after Yuna’s diagnosis, everything changed. She shifted her focus entirely to studying FOXG1 and how mutations in this gene affect brain development. Today, her lab is making strides using advanced research techniques, including mouse models and genomics, to uncover the mysteries of FOXG1 syndrome.
Jae Lee, also a scientist at the University at Buffalo, had been studying a different genetic disorder called Kabuki syndrome, but after Yuna’s diagnosis, he joined Soo in her research. Together, they are using their knowledge and skills to better understand FOXG1 and work toward treatments that might one day help their daughter and others like her.
Their journey isn’t just about scientific discovery—it’s about love. “We do this for Yuna,” they often say. “But we’re also doing it for every parent out there searching for hope.”
Life Beyond the Lab
At home, Yuna is the center of the Lee family’s world. Although she cannot speak, she communicates with her family through her beautiful smile. Her little brother Joon is her constant companion, and their bond brings joy to everyone around them.
Life with Yuna has its challenges, but it’s also filled with small victories. For Soo and Jae, those moments—like when Yuna sits up on her own or responds to her name—are worth everything. “Her smile says it all,” Jae says. “It’s how she tells us she loves us, and we feel it deeply.”
Outside the lab, the Lees find time to recharge through simple pleasures. Soo loves to read, and Jae spends time gardening and landscaping. They also enjoy playing tennis and ping pong with Joon, finding balance in the little things that bring joy amidst their demanding work.
A Message of Hope for FOXG1 Families
To the FOXG1 community, the Lees want to send a message of hope. They know firsthand the emotions that come with this journey—the uncertainty, the worry, and the exhaustion. But they also know the power of perseverance and love. Every day, they push forward in their research, not just for their own family but for every family touched by FOXG1 syndrome.
As they look toward the future, Soo and Jae hope to make progress in understanding the FOXG1 gene and finding treatments that could make a real difference in the lives of children like Yuna. “We don’t know what the future holds,” Soo says. “But we do know that we’re not giving up. We believe in the possibility of progress, no matter how small, and that gives us hope.”
The Lees invite all FOXG1 families to join them on this journey, to lean on one another, and to believe in the power of science, love, and community.
To learn more about Drs. Soo and Jae Lee, check out their bios here.
