Why I do this work
Where science becomes personal and the personal changes science.
I do this work because I live this work
I am a writer, speaker, patient advocacy leader, and translator of lived experience. For nearly 15 years I have worked to help families living with rare diseases navigate the space where science, medicine, and everyday life meet.
As the mother of a daughter with a profound rare genetic condition, I have lived on both sides—working to advance drug development professionally while navigating the deeply personal realities of supporting my daughter. My work is deeply informed by the emotional and practical realities of families like mine who are seeking better treatments for their children, while also wanting the world to know how extraordinary their children are, exactly as they are.
Fundamentally I believe that some of the world’s most important breakthroughs in the treatment of rare disease will require fluency in not only the hospital, the laboratory, and the boardroom, but also in a family’s home—and all that matters there. Rather than seeing these worlds in opposition, I believe better science begins with better conversations. Progress happens when researchers, clinicians, advocates, companies, and families learn to understand one another—not simply speak to one another.
Most love falls between constraints, always conditional, always defined. What I see between this mother and her child transcends that. I don't have a name for it, it defies definition in the concrete but it is beautiful to watch as it speaks to the limitlessness of our capacity to feel."
Brent Stirton, Photojournalist, Getty Images, Praise for Whoosh
Biography
As a speaker and advisor, Hillary helps organizations move beyond engagement as a checkbox and toward genuine partnership. She speaks about rare disease, patient advocacy, scientific innovation, communication, resilience, ethics, and the power of story to shape better decisions. Her work challenges audiences to see that scientific progress is not driven by data alone, but by relationships, trust, and a shared understanding of what success truly means.
Most recently, Hillary served as Head of Advocacy at Neurvati Neurosciences and GRIN Therapeutics, a biotechnology company developing therapies for rare neurological diseases. There she worked with scientists, clinicians, executives, and patient communities to ensure that the lived realities of families remained central to the program. Prior to that role, Hillary spent time consulting multiple companies on patient engagement and experience.
Before entering biotechnology, Hillary founded The Cute Syndrome Foundation, where she continues to serve as Board Chair. Through the foundation, she has helped build research collaborations, support families, and accelerate scientific discovery for an ultra-rare neurodevelopmental disorder known as SCN8A-related disorder.
Hillary holds a PhD in Communication and Rhetoric and has devoted her career to helping people understand one another across disciplines, experiences, and priorities.
The same questions that drive Hillary’s work also shape her writing. Through memoir and narrative nonfiction, she explores what illness, caregiving, love, and uncertainty reveal about what it means to be human. Across every part of her work, whether on a stage, in a boardroom, or on the page, she is driven by a single question: How can better stories lead to better science—and a more compassionate world?
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