Something must be done. People are suffering, families are being pulled apart, and patients are being misdiagnosed and improperly treated. I decided that others need not suffer as I have through countless tests and doctor visits in order to find answers. I decided to fight for awareness so that the disease that afflicts me and thousands of others worldwide would share in deserved scientific spotlight so that future generations would have hope.
My name is Susan, and I suffer from a disease of the Frontotemporal lobes (FTD).
Instead of going silently into that good night, my caregiver Cindy and I have dedicated two precious years of what remains of my life to creating a film, “Planning for Hope”. Bold and arresting and still in the works, it is aimed at unveiling the truth about Frontotemporal Disease, addressing the surrounding issues and controversies, and offering hope to those affected. Due to the negative stigmas attached to the word dementia, the movie will make a case for referring to FTD as a disease and we will refer to it as such throughout the website.
This film promises to open doors of understanding and opportunity as well as to help move FTD from the status of “orphan disease” into the mainstream medical community. People who suffer from FTD and their families share openly about their struggles, how they deal with the discrimination heaped upon them, their confusion, and their pain. These stories are blended with the latest medical and scientific advances delivered by some of the most brilliant minds in research.
Getting a diagnosis of a terminal disease is so very hard, but hopefully through the film, we can help make a difference. The movie has come so far, but there is much still to be done before my dream becomes a reality.