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Kapsambelis’ The Inheritance: On Shared Genes and Hope for a Lingering, Deadly Disease

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Alzheimer’s disease robs people of their memories, fine motor skills, and eventually, their lives. Galen “Moe” DeMoe first exhibited the symptoms with flashes of temper and odd behavior, which intensified over time. He was diagnosed in 1973 at age 43, hospitalized five years later, and never returned home. He died in 1989, when he was only 59.

Sadly, that wasn’t the last that the family would deal with this debilitating disease. The DeMoes carry a rare genetic mutation that leads to early onset Alzheimer’s.

Many of us associate Alzheimer’s with the elderly; after age 65, your risk of developing the disease doubles every five years. However, those who have had concussions or head injuries or those with Down syndrome are higher risk, as well as women. And it can strike at any age.

Mt. Lebanon, Pa., author Niki Kapsambelis elegantly captures the North Dakota family’s plight in her book The Inheritance. Of Moe and Gail DeMoe’s six children, five carried the mutation—Brian, Lori, and Doug died from complications from Alzheimer’s, while Dean and Jamie are still leading active lives. Only Karla tested negative for the mutation and is now a fierce advocate for her family.

Now, Dean’s children, Jamie, and several family members visit Pittsburgh, Pa.’s University of Pittsburgh Medical Center at least once a year to participate in drug trials for the Dominantly Inherited Alzheimer’s Network (DIAN) as part of research for a cure for Alzheimer’s.

The drug trial is testing removal of amyloid—pieces of protein that eventually build up to form plaque between brain cells. Kapsambelis explained that “doctors and researchers think amyloid is the first domino that falls,” so they want to know if stopping amyloid before a patient has symptoms will stop tau—tangles—from forming inside dying cells.

Researchers hope to study the effects of amyloid and tau on the brain years before symptoms appear and stop the disease’s progress. Looking at both amyloid and tau in a living patient helps researchers better understand the disease process and develop drug therapies that target each stage of that process.

The DeMoes and Kapsambelis—a freelance writer, reporter, mom, and hockey coach—crossed paths when she was on a freelance project at the University of Pittsburgh in 2009. Brian, the oldest brother, died in late 2010, which catalyzed Kapsambelis to begin writing.

“If I was going to do this project in a serious way, I had to get started. I didn’t know how to get a book published, and I was really intimidated by that. I was also raising my kids and working.”

Kapsambelis sought the advice of a friend who had been published. He taught her how to write a book proposal. With the DeMoes’ approval, Kapsambelis signed with a literary agent, and the proposal was purchased by Simon & Schuster. This was the beginning of five years packed with travel to several states for hundreds of interviews and conferences—as well as weddings and funerals— phone interviews, and several drafts and rewrites. Kapsambelis said, “This experience taught me to look deeper at who I’m talking to and who that individual is as a person.” She had never formed such close relationships with her subjects before.

“Basically they became part of my family and I became part of theirs. I think it will change not only the way I interview people, but the way I look at people.

The Inheritance is available wherever books are sold.

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