Matt and Vanessa Nehrkorn

By Matt Nehrkorn

Hi all!  We are the Nehrkorn family from Wilsonville, Ore. We thought we were living an average everyday life until my youngest son, Oliver, turned 18 months of age.

My wife, being a dental hygienist, found it odd that he had yet to pop his first tooth. We put him in her exam chair and took x-rays to see what was going on.

To our surprise, Oliver was showing very few teeth on his film and the two that were closest to coming in had a conical shape to them.

When those teeth finally did express themselves, they were pointy shaped.  He was more or less diagnosed within a few days though test results weren’t official until a few months later.

Our son, Oliver

In 2015, we attended our first National Foundation for Ectodermal Dysplasias (NFED) Family Conference in Colorado Springs.  Not only did we gain a lot of knowledge, but we met a number of families going through the same things we were.

That weekend we realized how important it was to get involved with the NFED.  Not only bringing awareness but how critical it was to generate funding for research and assisting other families in need.



Cookies for a Cure

Our first fundraiser was simple.  Cookies for a Cure.  We piggybacked on our family’s church and their large yearly fundraiser. We set up a table and sold cookies.  People had never heard of the NFED and ectodermal dysplasias, but they wanted to help.  It was a small fundraiser, but it was a start.

5k Don’t Sweat It Walk/Run Event

Our next fundraiser was much larger in scale. We decided to host a 5k Don’t Sweat It Walk/Run event in honor of our son. He thinks he’s famous because his name is on the shirts. This event was a great success. We had a number of sponsors, donors and nearly 100 participants.

This event created lots of awareness and over $9,000. We’ve been approached by new companies and other NFED families about being involved in the future.  If things go accordingly, we are hoping to double our fundraising total for next year.

If anyone would like to start this type of event, please feel free to contact us and we can get you up and “walking”. It is a lot of work but it feels fantastic to be able to give back to an organization that does so much for those affected by ectodermal dysplasias.  You can do this!

Though volunteering is time-consuming it is very necessary.  Not only does it bring ectodermal dysplasias and the NFED to the front and center, it also helps connect local affected families in your area. These connections can be a lifeline, a wealth of support and encouragement. It showed Oliver that he is not alone. It really is supporting you. Supporting each other.

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4 comments on “Fundraising? You Can Do this!”

  1. 1
    Anwar Jeffery on May 6, 2019

    Thanks for your encouragement. This will surely spur us into action just before our first NFED conference.
    Once we are ready, we’ll contact you.

    1. 2
      Jodi Edgar Reinhardt on May 6, 2019

      Great! We look forward to hearing from you. Just ask for Lea. She’ll be happy to work with you when you are ready. We look forward to seeing you at your first Family Conference! ~ Jodi, NFED, Director, Marketing and Communications

  2. 3
    jenni young on May 6, 2019

    thanks for your inspiration. we are looking forward to our first conference thos year!!

    1. 4
      Jodi Edgar Reinhardt on May 7, 2019

      You are welcome! We look forward to meeting you in Chicago. It’s going to be great fun! ~ Jodi, NFED, Director, Marketing and Communication

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