By Josh Long

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This is Austin, now five years old. What a cutie with a beautiful smile!

Why do we donate our time and money to the NFED?  Because the NFED is family! 

Two years ago, we attended our first Family Conference in Orlando, Fla. through a very generous NFED scholarship.  The conference was a life-changing event for our entire family. We had mom, dad, son, daughter, grandma and grandpa in attendance. 

When we came to the Orlando conference, our son Austin (then age 2 ½) had just been diagnosed with hypohidrotic ectodermal dysplasia (HED).  Our entire family was scared because we did not know what to expect with HED or how it would affect Austin.  

By the time Austin was diagnosed, we had already seen 14 separate doctors and specialists and none of them knew why Austin was having the problems he was having as a baby and toddler.  The conference changed our lives for the better because it educated us on ectodermal dysplasias. 

The conference gave us the reassurance that everything was going to be okay, that Austin was going to be okay, actually that Austin was going to be great!  Speaking with other families with ectodermal dysplasias and attending the conference sessions gave us the strength and knowledge we could not find anywhere else. 

The NFED has continued to be there for us, their staff is absolutely incredible, and we consider the NFED as part of our family.  We cannot imagine what life would be like without the NFED.

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Austin loves Dinosaurs! On his fieldtrip to the Museum.

Our family donates to the NFED through direct donations and employer match donations.  Last year, my company agreed to hold a “Charity Jean Day” for the NFED in honor of our son Austin.  It took me two years to arrange the “Charity Jean Day” event.  

I started working on setting up the this fundraising event after attending a session at the Orlando conference on how to fundraise for the NFED.  One thing they taught us was to be persistent and it worked. After two years, our first “Charity Jean Day” event at my office was a success. 

We look forward to holding other fundraising events for the NFED. We need to support each other and pay it forward.  We are family!

Inspired to volunteer or hold a fundraiser for the NFED? Email Lea Richardson, NFED manager, community engagement, at or call her at 618-566-6871. You can also learn more on our website about volunteering. 


Other volunteer and Family Conference spotlights:

Top 10 Reasons to Go to Family Conference

Many Hands Make the Work Light

A Chance Meeting Changed My Life

Share Your Story

4 comments on “Support Each Other: We are Family!”

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