Wilsonville family spreads awareness for little-known disorder ectodermal dysplasias with fun run

SUBMITTED PHOTO - Oliver Nehrkorn and his family hope to raise money and awareness about ectodermal dysplasias, a rare group of disorders he's battled his whole life.For the second consecutive year Wilsonville will play host to the Don't Sweat It 5K Run/Walk on Aug. 12 — a fundraising effort created by a local family to benefit the National Foundation for Ectodermal Dysplasias.

Wilsonville's Matt Nehrkorn says he and his family had been looking for a way to contribute to NFED ever since his youngest son, Oliver, was diagnosed with the disorder a few years back. Doctors discovered the disorder at a routine dental check-up more than five years ago, a moment that dramatically changed the Nehrkorns' lives.

"I had never heard of the disorder and we didn't know anything was wrong with him until we took him in at 18 months," Nehrkorn says. "We took X-rays and they were showing very few tooth buds, which essentially meant there weren't teeth growing in his mouth. Our primary physician, who has been a doctor for 20 years, had never heard of (ectodermal dysplasia), so it's not something you really come across."

Affecting some 7,000 people around the world, Ectodermal Dysplasia is a group of closely related conditions that affect ectodermal structures such as the hair, teeth, nails, sweat glands, salivary glands and digits among other parts of the body.

For Oliver, the disorders have meant multiple surgeries, many implants in his jaw and countless trips to the doctor's office. He battles other difficulties daily — like the inability to sweat, which can be dangerous during hot summers like Oregon has experienced thus far — but for the most part he lives a normal life like anyone else.

Flash-forward to the present and Oliver is now 7 years old and a student at Sacred Heart School in Portland. He plays youth sports in Wilsonville, and is generally thriving despite two surgeries in the past year alone. Nehrkorn says the goal of the 5K run and walk is to raise awareness as well as money for the little-known disorder.

"This is actually our second year, and we got close to 100 people to come out last year and a number of sponsors to support the event," Nehrkorn says. "We want to raise money for other families who might not be in a good place financially to cover all the costs that come with this responsibility."

Beginning at Therapeutic Associates in Wilsonville, the race will start at 9 a.m. with registration beginning at 8 a.m. Participants will get a T-shirt for registering, with a cost of $25 for those under 13 and $35 for runners older than that.

The event raised a little more than $9,000 in its inaugural season, and Nehrkorn hopes to get an even bigger turnout to raise more money and awareness this year. The fundraiser is up to more than $6,000, but Nehrkorn's goal is $10,000.

"It's not a timed event or anything like that, so don't come out if you're looking to qualify for the Boston Marathon, but it's a fun time for a good cause," Nehrkorn says. "Friends and family were the primary turnout last year, so we're hoping to get more local turnout and also a few other families affected by the disorder."

Contact Wilsonville Spokesman reporter Andrew Kilstrom at 503-636-1281 ext. 112 or This email address is being protected from spambots. You need JavaScript enabled to view it..

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