As a mom of three, my journey into the world of rare disease advocacy began with my youngest child and only son, Ted. Ted’s medical challenges have always been complex, a puzzle that seemed impossible to solve. Since 2014, he has been part of the Undiagnosed Diseases Network (UDN), and in 2022—after years of searching and uncertainty—we finally received his diagnosis. That moment changed everything for our family.
Ted’s journey has been marked by countless appointments, tests, and sleepless nights trying to decipher his medical mysteries. His challenges include neuromuscular and global developmental issues that didn’t fit into any known framework. The UDN became our lifeline, offering groundbreaking medical care, unwavering support, and hope when we needed it most.
This life-changing experience ignited a passion in me to advocate for others walking similar paths. I’ve dedicated myself to ensuring that the UDN remains a resource for families navigating the uncharted territory of rare diseases. My work with the Undiagnosed Diseases Network Foundation (UDNF) has taken me to legislators, where I share the transformative impact of the UDN, advocating for continued funding and expansion. I’ve also focused on raising awareness about the critical importance of access to timely diagnoses, especially for those with rare conditions affecting neuromuscular and developmental health.
Every family deserves the answers and support we receive. Through advocacy and sharing our story, I’m determined to help ensure that more individuals living with rare diseases have access to the care and resources they need to thrive. Together, we can make a difference and transform the future of rare disease diagnosis and care.
