Announcing Trial By Fire: A Limited Podcast Series
Check out our very first episode: "Wolfram syndrome, Paralympic athletes, and all things patient engagement."
Stories
Walking Hand in Hand with Dementia
Lori, founder of Minnesota-based advocacy organization, Alzheimer’s Speaks, discusses her mission of providing awareness and comfort through support, understanding, and education for families and professionals dealing with dementia.
“When Huntington’s Disease Comes, It Comes”
Gabby McNary still remembers the day she tested positive for Huntington’s disease. “It was January of 2015,” she explains. "After a year of genetic testing, my neurologist told me that my results were in."
Knowledge is Power: One Woman's Journey From Adversity to Advocacy
How one woman helped herself — and others — through cancer treatment using research, advocacy, and acts of kindness.
Independent Woman: A Patient’s Story of Adapting to the Unpredictable
Spinocerebellar Ataxia (SCA) is a neurodegenerative disorder that affects the cerebellum, which is part of the brain that plays an important role in coordinated movements, speech, and balance. Cameryn, an SCA patient, shared her experiences with the condition and its impact on her daily life.
No Answers, No Cure: How a Mother Provides Care Amidst Uncertainty
Cameryn’s diagnosis journey began with fluorescent lights and long wait times at the DMV. She had long anticipated the written test for her driver’s permit. When Cameryn returned in minutes, Laura knew something was wrong. Cameryn had failed her eye exam.
Inside a family's fight against rare disease
Doctor after doctor, specialist after specialist, seemed to concur on only one point: They had never seen anything like what was happening to Santi.
