Niki.
INSPIRED BY DIFFERENCE.
Niki Kapsambelis was born and raised in Boston, Massachusetts. She worked for several years as a newswoman for the Associated Press in New England, Los Angeles, and Pittsburgh. Her work has appeared in publications around the world, including The Washington Post, Los Angeles Times, and People magazine. She lives in Pennsylvania.
As a journalist, I’m drawn to stories that illustrate the human condition in unexpected ways. Often, ordinary people are quietly making extraordinary differences all around us.
The Book.
THE INHERITANCE.
A Family on the Front Lines of the Battle Against Alzheimer’s Disease
An inspiring race against time: The courageous, hopeful story of the one family who may hold the key to finding a cure for Alzheimer’s disease.
Every sixty-nine seconds, someone is diagnosed with Alzheimer’s disease. Of the top ten killers, it is the only disease for which there is no cure or treatment. For most people, there is nothing that they can do to fight back. But one family is doing all they can.
The DeMoe family has the most devastating form of the disease that there is: early onset Alzheimer’s, an inherited genetic mutation that causes the disease in 100 percent of cases, and has a 50 percent chance of being passed onto the next generation. Of the six DeMoe children whose father had it, five have inherited the gene; the sixth, Karla, has inherited responsibility for all of them. But rather than give up in the face of such news, the DeMoes have agreed to spend their precious, abbreviated years as part of a worldwide study that could utterly change the landscape of Alzheimer’s research and offers the brightest hope for future treatments—and possibly a cure.
Drawing from several years of in-depth research with this charming and upbeat family, journalist Niki Kapsambelis tells the story of Alzheimer’s through the humanizing lens of these ordinary people made extraordinary by both their terrible circumstances and their bravery. Their tale is intertwined with the dramatic narrative history of the disease, the cutting-edge research that brings us ever closer to a possible cure, and the accounts of the extraordinary doctors spearheading these groundbreaking studies. From the oil fields of North Dakota to the jungles of Colombia, this incredible narrative redefines courage in the face of one of the most pervasive and mysterious pandemics of our time.
“The Inheritance is the story of the DeMoe family, plagued by familial, young onset Alzheimer’s disease. It is a story of heroes making extraordinary contributions to scientific research, of crusaders driven to change the course of this disease for the sake of their children, the next generation, all of us. I felt honored to read this important book, bearing witness to a historic moment in the quest to cure Alzheimer’s.”
“Kapsambelis is a beautiful writer whose storytelling transports you. I fell in love with the big, loud, awesome DeMoe family and was inspired by the doctors on their long, strange journey into Alzheimer’s research. The Inheritance offers a rare, human glimpse at this harrowing disease.”
“In her debut, journalist Kapsambelis builds a compelling narrative about Alzheimer’s disease around one North Dakota extended family…. In addition to clear discussions of the disease’s history and research, Kapsambelis successfully portrays Gail, Galen, and their extended family as fully fleshed individuals. An educational and emotional chronicle that should resonate with a wide variety of readers.”
“Niki Kapsambelis has produced an unflinching narrative of a family in an unfathomable situation, seamlessly weaving in the history of the disease and neuroscience’s ongoing race against the clock to find a cure. This is a truly important book.”
“Kapsambelis, an empathetic reporter and storyteller, obviously cares deeply for the DeMoes… With its ethical quandaries and likeable characters, this absorbing story will be of interest to medically curious readers.”
The Family.
MEET THE HEROES NEXT DOOR.
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.
The Doctors.
MEET THE HEROES IN THE LAB.
For most of its known history, Alzheimer’s disease has been a widely misunderstood and overlooked disease. But there have been a few notable exceptions.
Imagine you’re a doctor. Into your clinic walks a 40-year-old man who no longer remembers how to do a job he’s done every day since he was 18. Or a mother of eight who can’t figure out how to diaper her baby and keeps forgetting to pick up her older kids from kindergarten. Would you suspect you were looking at Alzheimer’s disease?
From turn-of-the-century Germany to 1960s France, from the dangerous countryside of Colombia to the oil fields of North Dakota, doctors were faced with this perplexing medical mystery. Some battled extremely long odds to move the science forward, inch by inch, in a disease that received little attention and even less funding.
Today, as we stare down a looming global pandemic, these are the minds whose work could lead us to the solution.
Reviews & Praise
“As one DeMoe after another learns of their horrible inheritance, Niki Kapsambelis adroitly weaves the saga of a family and its terrible genetic luck with the stories of the scientists, here and abroad, who are working to develop therapies for a relentless and always fatal disease. Kapsambelis’ insightful reporting makes it impossible not to marvel at the cruelty that Alzheimer’s Disease has inflicted on the DeMoe family.”
“Science is people. Niki Kapsambelis doesn’t let you forget that for one moment in this very human story. The Alzheimer’s community is so lucky to have this first-rate storyteller. Her book tackles the disease from every possible angle.”
“A model of immersion journalism, it is especially notable for its specificity and author Niki Kapsambelis’ empathy. The DeMoes laid bare their lives, and Kapsambelis repays their candor with a warts-and-all portrait softened by fondness and respect.”
“Excellent, accessible….A science text that reads like a mystery and treats its subjects with humanity and sympathy, this volume should be of interest to everyone, as Alzheimer’s is now known to be a major cause of dementia in the elderly and because we are facing a potential epidemic as the baby boom generation ages.”
“The Inheritance is the story of the DeMoe family, plagued by familial, young onset Alzheimer’s disease. It is a story of heroes making extraordinary contributions to scientific research, of crusaders driven to change the course of this disease for the sake of their children, the next generation, all of us. I felt honored to read this important book, bearing witness to a historic moment in the quest to cure Alzheimer’s.”
“Kapsambelis is a beautiful writer whose storytelling transports you. I fell in love with the big, loud, awesome DeMoe family and was inspired by the doctors on their long, strange journey into Alzheimer’s research. The Inheritance offers a rare, human glimpse at this harrowing disease.”
“In her debut, journalist Kapsambelis builds a compelling narrative about Alzheimer’s disease around one North Dakota extended family…. In addition to clear discussions of the disease’s history and research, Kapsambelis successfully portrays Gail, Galen, and their extended family as fully fleshed individuals. An educational and emotional chronicle that should resonate with a wide variety of readers.”
“Niki Kapsambelis has produced an unflinching narrative of a family in an unfathomable situation, seamlessly weaving in the history of the disease and neuroscience’s ongoing race against the clock to find a cure. This is a truly important book.”
“Kapsambelis, an empathetic reporter and storyteller, obviously cares deeply for the DeMoes… With its ethical quandaries and likeable characters, this absorbing story will be of interest to medically curious readers.”
Contact.
LET’S TALK.
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