AlphaNet REACH participant Jenna Russom may be early in her career, but she’s already making an impact in the Alpha-1 and genetics world. From growing up by the beach in Florida to working in an Alpha-1 research lab during college, Jenna’s personal experience with Alpha-1 has shaped her path in powerful ways. Now a graduate student in genetic counseling at Washington University in St. Louis, Jenna is working on research that centers the voices of others like her—people navigating life with a genetic condition like Alpha-1.
Jenna was born in St. Louis, Missouri but moved to Jacksonville, Florida when she was just two and a half. Her dad’s job brought the family there, and Florida quickly became home. “I grew up near the beach, and I loved going there with my family,” Jenna recalled. Though Jenna was technically born in Missouri, she considers herself a “Florida girl, not born but raised.” It wasn’t until she was 22 that she moved back to St. Louis to attend graduate school.
Alpha-1 has been part of Jenna’s family for as long as she can remember. Her oldest brother was diagnosed in the early ’90s after his pediatrician noticed he had an enlarged liver. When Jenna was born, her parents assumed she likely had it too, but didn’t want an official diagnosis to create potential challenges. “After my brother’s diagnosis affected his ability to get life insurance, my parents chose not to have me tested right away,” she explained.
Pictured: Jenna with family.
While Jenna never showed signs of asthma or needed inhalers, she remembers having frequent respiratory infections as a kid. Those issues mostly went away after she had her tonsils and adenoids removed. Her father, on the other hand, didn’t begin to show symptoms until his late 50s. After being tested for Alpha-1, he found out he was ZZ.
It wasn’t until college that Jenna got a clear answer about her own health. While studying microbiology at the University of Florida (UF), she learned about a research opportunity in Gainesville at the Alpha-1 Research Program. They were running the Alpha-1 Coded Testing (ACT) Study and offering anonymous genetic testing. She reached out to the lab looking for both a job and answers about her own health.
Dr. Mark L. Brantly, a professor and well-known Alpha-1 researcher, offered her a lab tech position. As part of her training, Jenna processed her own blood sample in the lab. “I walked through the whole wet lab process and got the results myself.” That’s how Jenna learned she was a ZZ. Her mom also submitted a sample, which Jenna tested and discovered she was an SZ—a rare combination when paired with a ZZ parent. Alongside that, Jenna worked on samples from other participants and started picking up lab skills, learning how the science works behind the scenes.
Jenna’s interest in genetics started early. She loved Punnett squares and pedigree charts in school and said it felt like solving a puzzle. Her brother’s fiancée introduced her to the idea of genetic counseling, and once she looked into it, it clicked. “I already loved genetics, but this gave me more drive and confirmation.”
Since UF didn’t offer a genetics major, Jenna chose microbiology and added a minor in Spanish. The language skills came in handy during summer jobs, especially helping Spanish-speaking customers in Florida.
Outside of academics, Jenna stayed involved in the community. She mentored middle school girls through the Women Building Women program and volunteered with tutoring programs for local kids. “Just being someone they could talk to once a week—that mattered a lot,” she shared. She still keeps in touch with the student she mentored, who now sends her photos from high school dances and graduation.
Jenna was also active in her sorority, Alpha Chi Omega, which partnered with Peaceful Paths, a domestic violence shelter in Gainesville. “It felt good knowing we were supporting something important right in our own city.”
Her connection to Alpha-1 solidified her choice to pursue genetic counseling, and she used her Alpha-1 Foundation scholarship to help cover the cost of grad school applications. She matched with Washington University in St. Louis and moved in with her aunt and uncle, something that’s helped her feel more connected to her family’s roots.
As a student, Jenna has enjoyed sharing her Alpha-1 story with classmates and faculty. She’s now working with Dr. Jeffrey Teckman, Professor of pediatrics and biochemistry and molecular biology at St. Louis University, on creating a research study focused on MZ individuals, an often misunderstood group within the Alpha-1 community. Her survey will explore how MZs feel about their diagnosis, what health choices they make, and how they cope. “I want to give them a voice and put more research out there about this underrepresented group,” she said.
Jenna first got involved with AlphaNet at the Alpha-1 Foundation 2024 National Conference in Miami. Her mom, who’s an SZ not on augmentation therapy, was already part of the REACH program with AlphaNet’s REACH Coordinator, Siobhan Lestina. After meeting in person, Siobhan signed Jenna up as well. Her dad also got connected with his AlphaNet Coordinator at the same event. “It was such a great experience meeting everyone and feeling part of something bigger,” she shared.
Pictured: Jenna attending the Alpha-1 Foundation 2024 National Conference in Miami.
In her free time, Jenna loves workout classes like pilates, yoga, and anything high-energy with a group. She also finds joy in walks, coffee runs, going to church, and St. Louis Cardinals baseball games. She’s still a proud Florida Gator, though, and makes sure to catch their games whenever she can. “Even though I’m far from home, that’s something I’m always going to carry with me.”
Pictured: Jenna at a St. Louis Cardinals game with friends during college and as a child, enjoying the same tradition with her family.
What keeps her inspired is how fast the research field is moving. From gene therapy to personalized medicine, she’s excited to be part of a future where patients get answers and real options sooner. At the heart of it all, Jenna is focused on staying grounded by balancing school, research, and real life. “I love science, and I’ve always loved connecting with people too. That’s what drew me to genetic counseling. It brings both of those worlds together.”
If you’re an adult MZ interested in learning more about her research study, please contact Jenna at j.russom.research@outlook.com.