Getting to the heart of genetic disorders

As part of her training to become a genetic counselor, Kirstin Risgaard, MS ’24, explained to a concerned family what Duchenne muscular dystrophy meant for their child. A rare genetic mutation, the disorder would progressively degenerate the child’s muscle fibers, gradually impairing the ability to walk, talk, and even breathe.

"It’s always hard discussing such a devastating diagnosis,” says Kirstin, who graduated from the Genetic Counseling Program at The University of Texas MD Anderson Cancer Center UTHealth Houston Graduate School of Biomedical Sciences in May 2024. “In this case, there was a treatment that the child was qualified to receive, so we were able to give the family hope.”

Kirstin and other genetic counselors fill a unique need in the health system—guiding patients and their families through the medical and emotional complexities of being diagnosed with a genetic disorder. Students in the two-year program at MD Anderson UTHealth Houston Graduate School—the oldest genetic counseling program in Texas—learn the dual disciplines of genetic science and counseling, training to help patients understand their diagnosis, process their feelings in a healthy manner, and plan a path forward.

“We want to be there for the family in that time, give them space to express themselves, and help them through what may be some of the most difficult moments in their lives,” she says.

Serving as a genetic counselor was not how Kirstin always envisioned her career in biomedical science. She initially focused on the laboratory, working on an undergraduate degree in genetics and genomics at the University of Wisconsin-Madison while researching Down syndrome and related neurodevelopmental disorders. Even as she increased her knowledge of the basic science behind Down syndrome, she felt something was missing.

“I was doing research on these cells, but what does Down syndrome look like in the real world?” she says.

Kirstin began volunteering at GiGi’s Playhouse, an organization that supports children with Down syndrome. She became a tutor for two children and a respite care provider for a family with a 13-year-old girl, becoming part of their lives and building close relationships with their families.

“It helped me see beyond Down syndrome and understand that these children are more than patients with a genetic disorder. They are little girls full of joy,” Kirstin says. “It also showed me what it’s like to have a child with disabilities and gave me an appreciation for what a genetic diagnosis means for parents and siblings. That helped really spark my interest in genetic counseling.”

In her first semester of training in the program at MD Anderson UTHealth Houston Graduate School, she engaged in simulated counseling sessions with other students. In her second semester, she interacted directly with patients, an experience she recalls as particularly challenging for the first few sessions. She credits the supervisors in the program with providing encouragement and consistent feedback on how she could improve.

“They are so supportive and remind us that not every session will work out exactly as we hope—to give ourselves grace,” she says.

Kirstin received support in her educational journey through the Barbara L. Kennedy Memorial Scholarship. Not only did it grant her access to in-state tuition rates as an out-of-state student, but it also reduced her student debt.

She plans to return to the Midwest and provide genetic counseling to families, drawing on her previous volunteer work.

“Over the years, I’ve developed a lot of perspective,” she says. “I’ve learned the importance of meeting people where they are, understanding that everyone comes from their own place and brings their own experiences. I hope to continue using that to help others.”