If you were told that you had inherited a deadly gene, and you had only a handful of years left before you begin losing your memory, how would you react? For the DeMoe family of Tioga, North Dakota, the answer was simple: Fight back.
After learning in 2004 that a fatal mutation was working its way through their family tree, the DeMoes made a collective decision to enter research that uses their rare condition as a testing ground for experimental treatments. For those who have the mutation, that means a continuous battery of tests and, in many cases, dosing with drugs that hope to stop Alzheimer’s before it starts.
For those without the mutation, the struggle is different: they support their siblings, parents, spouses, and children through each step of the journey, a formidable task.
Along the way, there are ethical questions, life lessons, triumphs and setbacks to confront. Their hope is that by sharing their story, they will bring much-needed awareness to a disease that afflicts millions of people worldwide, and that the end result will be a viable treatment.