Reporting from the 61st annual American Academy of Neurology meeting in Seattle in 2009, Patient Power Host and Founder, Andrew Schorr, sat down with Katie Moser of New York City, for a candid conversation about why she is dedicated to speaking out about Huntington’s Disease (HD) and how it has changed her life. Huntington’s Disease is caused by genetically programmed degeneration of neurons in certain areas of the brain and can result in uncontrolled movements, loss of intellectual faculties, and emotional disturbance. It can be a life shortening and disabling condition.
At twenty-seven years old, Katie is familiar with the effects of this serious genetic condition because, among her relatives with Huntington’s Disease, are her grandfather and her mother. She also worked as an occupational therapist in a center for people with HD. Five years ago, Katie decided to have the genetic test to see if she had the HD gene. The test came back positive. Although this was before Congress had passed legislation to protect people with genetic conditions, she decided to “go public.”
In this interview Katie shares her passion for raising awareness about HD and being involved in the community. Her involvement in clinical trials really sums up her stance: “I’m active in clinical trials as long as I can qualify for them. I’m always looking out for what’s coming down the pipeline that I might be able to get involved in because it doesn’t just affect me. It affects my family, it affects my friends, it affects my whole HD community.”
Huntington's Disease Patient & AdvocateKatie Moser, 27, is a courageous young woman who chose to be tested for Huntington’s Disease and found out she was positive for the serious genetic condition. Her mother, grandfather, and at least two other relatives had already been living with the diagnosis. Rather than keep it a secret, Katie, who has had no symptoms, decided to help others by... more >