Meet Sarah
Daughter. Sister. Aunt. Friend. Advocate.
I was diagnosed with McCune-Albright Syndrome and Fibrous Dysplasia (FD/MAS) when I was about three years old. From the very beginning, my parents became my strongest advocates. They taught me that every healthcare decision should be rooted in one guiding principle: quality of life. As I grew older and found my own voice, they encouraged me to become an active participant in my care and empowered me to advocate for what mattered most to me.
That foundation shaped who I am today.
What began as advocating for myself quickly grew into something much bigger. I discovered the power of connection through the rare disease community, whether it was supporting families navigating a new diagnosis or meeting someone with FD/MAS who had never spoken to another person living with the condition. Those conversations reminded me that advocacy isn't just about raising awareness. It's about helping people feel seen, understood, and less alone.
As my involvement grew, so did my opportunities to lead. I serve on the Patient Advisory Council for the FD/MAS Alliance, where I helped establish the council and have been a member since 2023. I work alongside patients, caregivers, researchers, and healthcare professionals to ensure the lived experiences of people with FD/MAS are reflected in research, education, and patient support initiatives.
Today, I bring that same perspective to audiences across healthcare, education, and corporate settings. I've had the privilege of speaking for organizations including The MAGIC Foundation, the University of California, San Francisco (UCSF), university classrooms, and corporate teams through Lunch & Learn sessions focused on disability inclusion, accessibility, and the power of lived experience.
Whether I'm speaking on stage, consulting with organizations, or connecting one-on-one with someone navigating a rare disease, my mission remains the same: to help create a world where accessibility, inclusion, and belonging are built into every conversation—not treated as an afterthought.