WDAZ: Your Home Team

Published June 17, 2011, 08:19 PM

North Dakota family the center of groundbreaking research

Fargo, ND (WDAY TV) - A North Dakota family is celebrating at Fargo's Holiday Inn "at this hour" --- a summer wedding after months of planning. But this is not just "any family."

By: Kevin Wallevand, WDAY

For the last 5-years, WDAY Reporter Kevin Wallevand has followed the DeMoe family. Members of that family are providing valuable, ground breaking research to some of the top Alzheimer's scientists in the world. That is because that family is a carrier of a rare mutation that leads to "early on-set" Alzheimer’s. But as Kevin tells us, there are "new" developments involving a "new" generation.

“Curling your eye-lashes??”

Amber Hornstein spent the morning doing what summer brides do, last minute details like hair.


In the room with her today, many of her cousins who like the rest of the DeMoe family are celebrating this grand wedding, but also mindful of what lay ahead for many of them. For the last several years, we have had unprecedented access to the DeMoe family, following them to Pittsburg where university scientists are closely studying and testing this North Dakota family that carries a rare Alzheimer's mutation that curses many with the disease early in life. As you may recall, five of the 6 DeMoe children have Alzheimer’s. One, Brian, recently died. But now, tonight, new developments.

Karla Hornstein – Sibling have mutation: “They will have the test done, a special blood test kept under lock and key.”

Besides the 5 DeMoe children who have the gene and the disease, Pittsburg is now enrolling and testing their children, now young adults, and also DeMoe cousins, many here at the wedding today.

“And that scares me.”

Robin Harvey is a DeMoe cousin. Her mother had the gene and died of Alzheimer’s. Now Robin and her sisters have the disease, Robin has five young children.

Robin Harvey – Has Alzheimer’s Disease: “The scariest thing for me was, there are three of us sisters and all three of us have the gene. And that is very significant. “

Lindsey Sillerud, whose father Dean, has been diagnosed with the disease, is now part of the research and has been tested.

Lindsey Sillerud – Got tested for mutation: “I have a vision of how I want my life to go and how I want to live my life and I feel if I were to know either way that would change and there is no point in knowing when there is no cure.”

Lindsey's cousin Jennifer, whose father Doug has Alzheimers

“Mine is negative.”

Has been tested as well.

Jennifer DeMoe – Got tested and knows results: “Hardest decision I have ever made because it was nerve racking and it was bothering me more not knowing more than knowing. I was really nervous but reassuring I did not have it. “

This family has been profiled nationally by top Alzheimer's experts who know the DeMoes and now a new generation of them could help unlock the key to early diagnosis and perhaps a cure to the dreadful disease, impacting millions.

Dean DeMoe – Has the mutation: “Everybody, the younger kids are interested in it and wanting to get into the research and it is wonderful.”

Karla: “It means we have to be more of a family and be supportive of each other. We have to do this together.”

And so tonight, this is just not a wedding for Amber Hornstein, it is an emotional family gathering. Cousins who share not only a family bond, but a hope they all could one day help spare families the painful journey so many of them have traveled.

“I hope the outcome of this is we provide a cure and providing a step to finding a cure.”

Researchers tell the family that it will be crucial to study the scanned brains of the younger Demoe children and cousins because that information will tell them more about "early" onset Alzheimer’s.