The Inheritance: A Family on the Front Lines of the Battle Against Alzheimer’s Disease

The DeMoe family of Tioga, North Dakota, who were featured in the acclaimed nonfiction book “The Inheritance: A Family on the Front Lines of the Battle Against Alzheimer’s Disease” (Simon & Schuster, 2017), learned you could inherit a rare genetic mutation that guarantees the development of Alzheimer’s Disease, with symptoms appearing in your 40's. 

ALEXANDRIA, Minn. — Imagine learning in your 30's that you inherited a rare genetic mutation that guarantees the development of Alzheimer’s Disease, with symptoms appearing in your 40's. Now imagine that you also have a 50% chance of passing that mutation on to your children.

That was the fate of the DeMoe family of Tioga, North Dakota, who were featured in the acclaimed nonfiction book “The Inheritance: A Family on the Front Lines of the Battle Against Alzheimer’s Disease” (Simon & Schuster, 2017).

But instead of sitting back and accepting their fate, this extended family made an extraordinary decision: to commit themselves across multiple generations to groundbreaking research that seeks to solve Alzheimer’s before symptoms develop.

On Saturday, June 15, the family takes its cause to Miltona Golf Club in Alexandria, Minnesota with the 3rd Annual Leaf Valley Charity Golf Tournament. Founded in 2017 by Jesse Bodell, owner of Leaf Valley Mercantile, as well as DeMoe family member Lindsey Sarkilahti and her husband, Jon — both residents of Alexandria — the tournament is presented by Leaf Valley Mercantile. All proceeds will be donated to the Dominantly Inherited Alzheimer Network (DIAN).

Based at Washington University in St. Louis, DIAN’s clinical trials are testing drugs that aim to halt Alzheimer’s in its earliest stages. In addition to the DeMoe family members, several hundred people worldwide are participating in these trials, which target people who have inherited a rare genetic mutation that guarantees early-onset Alzheimer’s. If a drug is able to prevent the disease from progressing in people who carry a genetic guarantee, researchers theorize that it can then be expanded for use in the general public to help people who carry a high risk of developing the disease.

Alzheimer’s, which is the most expensive disease in the United States, is the 6th leading cause of death in the U.S. It kills more people annually than breast and prostate cancer combined, and among the top 10 causes of death in the U.S., it is the only one that has no cure and no way to slow it down.

Advanced age is the biggest risk factor for developing Alzheimer’s. After age 65, your risk of developing Alzheimer’s — even without a family history — doubles every five years. On Jan. 1, 2011, the first U.S. baby boomer turned 65. Every day since, 10,000 more Americans have reached this milestone. By 2050, if no treatment is found, approximately 1 in 3 Medicare dollars will be spent on Alzheimer’s and related dementias.

Last year, the Leaf Valley tournament raised more than $2,000 for this crucial cause. In 2019, Local businesses and individuals are generously donating sponsorships, door prizes, and player appreciation gifts.

This year, the tournament will feature 80 golfers competing for a top prize of $200 as well as a $5,000 Hole-In-One competition sponsored by Miltona Golf Club, which offers a $5,000 prize to the winner and a $5,000 donation to DIAN. Several members of the DeMoe family will participate as both organizers and players of the event, which will include an after party at Leaf Valley Mercantile with music by Marco Vendrame at 4 p.m. followed by Ultrasound at 8 p.m.

All events are open to the public, and members of the media are welcome and encouraged to attend.

ABOUT THE DeMOE FAMILY:

Originally hailing from Tioga, North Dakota, the DeMoe family is now spread across the United States. In 2004, they learned that their family tree includes PS1, a rare genetic mutation that guarantees carriers will develop early onset Alzheimer’s disease. Their journey to turn this tragic news into hope for a cure was chronicled in the 2017 book The Inheritance: A Family on the Front Lines of the Battle Against Alzheimer’s Disease by Niki Kapsambelis. The book was named one of the top nonfiction works of 2017 by Kirkus Reviews and garnered acclaim from The New York Times, Chicago Tribune, Washington Post, and Wall Street Journal. The family has been featured on the TODAY Show with Maria Shriver as well as C-SPAN. Read more at https://www.simonandschuster.com/books/The-Inheritance/Niki-Kapsambelis/9781451697322

ABOUT THE DOMINANTLY INHERITED ALZHEIMER NETWORK (DIAN):

The Dominantly Inherited Alzheimer Network is an international research effort focused on dominantly inherited Alzheimer’s disease. Dominantly Inherited Alzheimer’s disease (DIAD) is a rare form of Alzheimer’s that causes memory loss and dementia in individuals — typically while they are in their 30s to 50s. The disease affects less than 1% of the total population of people with Alzheimer’s. The aim of the Dominantly Inherited Alzheimer Network (DIAN) is to find solutions to treat or prevent this disease and, potentially, all forms of Alzheimer’s. Read more at https://dian.wustl.edu/about/

ABOUT LEAF VALLEY MERCANTILE:

A bar for more than a century, the Leaf Valley Mercantile has been transformed into a restaurant and bar with a small-town, welcoming atmosphere — the local “Cheers” that feels like happy hour all the time. With an outside seasonal bar, live music, pull tabs, and darts, it’s the perfect place to relax and hang out.We are located at 15233 Co. Rd 6 NW in Garfield, Minnesota.

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ALEXANDRIA, Minn. — Imagine learning in your 30's that you inherited a rare genetic mutation that guarantees the development of Alzheimer’s Disease, with symptoms appearing in your 40's. Now imagine that you also have a 50% chance of passing that mutation on to your children.