SUNY Empire Alumna Raises Awareness of Huntington’s Disease
(SARATOGA SPRINGS, NY — April 1, 2025) Tanita Allen ’17, ’22, an author and advocate, recently spoke to students at the Brown University School of Public Health about her battle with Huntington’s disease (HD).
Her experience is chronicled in her memoir, “We Exist.” The book is about Allen’s struggles with HD and the role that racism played in delaying her diagnosis as well as the environmental factors that accelerated her disease progression. She also discusses her determination to live a life of joy and purpose, which includes raising awareness about HD.
HD is an inherited, progressive neurodegenerative disease that causes uncontrolled movements, cognitive decline, and behavioral changes.
In her blog for Huntington’s Disease News, she wrote about her speaking engagement and why she was thrilled to present at Brown.
“As an advocate for Huntington’s disease awareness, particularly from the perspective of a marginalized community, I knew this was an invaluable opportunity to engage with future medical professionals and public health leaders,” she says. “I was eager to share my journey not just as a person living with HD, but as someone who has navigated the complex and often unjust realities of the healthcare system.”