An Unexpected Turn and Joy
In the world of medical research, the voices of those directly affected by rare diseases often go unheard. But Haley Brunelle is changing that narrative, one research project at a time.
Eight years ago, Haley's life took an unexpected turn when she learned during pregnancy that her son would face extraordinary challenges. After a 16-year career in marketing, brand strategy, and design, Haley found herself navigating a completely different landscape when Felix Neptune was born with a rare genetic condition.
"We learned in utero that it would be a very atypical pregnancy and birth. He would have a very different and likely very challenging life," Haley explains. "The genetic testing revealed that he would have a very rare condition that there was literally no roadmap for."
Haley shares that today, Felix is a vibrant eight-year-old who "zips around in his power wheelchair," loves Minecraft, and is the best reader in his class. Though he is not able to stand independently and uses an augmentative adaptive communication device to speak, Haley shares how his infectious smile and joy shine through in everything he does.
Along with her husband, TimT, their journey began with three months in the NICU and continues with visits to nearly every medical specialist imaginable. This experience eventually led Haley to a career change that perfectly merged her professional background with her lived experience as Felix's mother.
Family Engagement in Research
Recently, a unique opportunity came up at Gillette Children's, where Felix had received care for years. Haley now works in the research department, ensuring that studies on conditions like spina bifida, cerebral palsy, etc. include people with relevant lived experience.
"What I do is make sure that when we are studying spina bifida, or when we are studying cerebral palsy, we have people with that specific lived experience helping design the research itself," Haley says. "I take my design background and my curation background, my marketing background, and I pull everything together for medical research." However, she is emphatic that "What qualifies me for the job that I'm doing is being a mom to Felix and having that sort of ancillary lived experience,"
Essentially, Haley’s role involves creating research teams that bring together individuals with lived experience, clinicians, and scientists to create more effective medical research.
Centering Patient and Family Voices
When asked why it's important to center the voices of patients and families most impacted by rare diseases, Haley doesn't hesitate to respond.
"The best doctors and the best scientists, they're so good at what they do, and they dive so deep into what they do. I mean, we wouldn't be here if it weren't for those people," she acknowledges. "But I think that when we integrate the voice of that lived experience, and the person that you're actually doing the research for, it's kind of democratizing the research process in a good way."
Haley explains that this integration has benefits that extend beyond the research itself. Scientists and researchers gain new perspectives they hadn't considered before. She shares an example that demonstrates the value – perspectives from a current project developing a sit-to-stand wheelchair: "When you start to talk to them [the patients] about the day-to-day experiences, or the reason that [someone] wants to stand up is to participate...just making food around the table or in the kitchen, and she can't do that when she's in her wheelchair."
These insights shift perspectives in unexpected but welcome ways. Haley emphasizes, "When you design for disability, everybody wins. It's the 'nothing about us without us.' It rings true in the disability community and the rare disease community."
Leading with Humility and Humanity
For healthcare providers and educators, Haley believes humility is key. She quotes Dr. Tori Bahr, one of complex care physicians providing care for her son, Felix: "The most powerful thing that we can say as people in places of power—as the clinicians, as the people with the advanced degrees—is 'I don't know.'"
In her perspective, this admission opens the door to mutual learning and connection. "That opens the door to be like, 'Oh, I'm like them, too. I also do not know,'" Haley explains. "First, we are human, then we are maybe mom, then we are maybe daughter, and then we are our PhD or MD."
She stresses the importance of finding common ground and leading with humanity rather than credentials. "The way that we find that common ground, and we truly find connection, is when we lead with our own humanity."
The Power of Storytelling
Haley firmly believes that storytelling is one of the most effective ways to create understanding and connection. "That's how we have evolved as a human race. We tell stories about things that happened in the past in order to inform our future," she reflects.
She cites programs like Family Led Academic Grand Rounds (FLAG), being piloted at the University of Wisconsin's Wiseman Center, that bring families into medical education to share their experiences. This approach helps future healthcare providers develop emotional intelligence and empathy, alongside clinical expertise.
Haley also promotes the use of pictures to augment stories. "I think pictures right, paint a good picture. It helps the verbal," Haley says. "I think that's why I feel like maybe people don't make that connection."
Looking Forward
For Haley, the collision of her worlds—her professional background and her experience as Felix's mother—has created an unexpected but meaningful career path. "The last 18 months, in all the right ways," she says about how much she's learned in her new role.
Haley foresees that as medical education continues to evolve, incorporating the lived experiences of patients and families will be crucial. Through her work, she exemplifies how bridging the gap between clinical expertise and real-world patient experience can transform medical research and healthcare delivery.
"We are involving the people that we're doing the work for in the design of the work," Haley summarizes. It's a simple concept with profound implications for the future of medicine—especially for those navigating the complex world of rare diseases and disabilities.