By Stanley Zwirn


Our beautiful little girl was born in the month of May. As time wore on, we noticed that at 18 months of age, she did not have any teeth and had a terrible time with the heat.

With recommendation from our older son’s pediatric dentist, we went to the UCONN Health Center for a diagnosis. Jennifer was subsequently diagnosed with ectodermal dysplasia.

One evening while we were watching Ripley’s Believe It Or Not, there was a segment about a 5-year-old boy from Louisiana who had a problem with dentition and heat like my daughter. He was unable to go outdoors without wearing a special suit that NASA had developed for him.

The suit was attached to a portable air-conditioning unit on wheels, which he pulled along behind him wherever he went. We immediately called the TV station, and they referred my family to Mary Kaye Richter and the NFED.

A few months later, we were in Oak Brook, Illinois attending a life insurance conference. Since we were so close to Mary Kaye’s home, we decided to give her a visit to learn more about NFED’s mission, as well as get an explanation as to what ectodermal dysplasia is, and what it might mean for us in the long term.

Mary Kaye
Mary Kaye, our founder with Chuck and Charley

Mary Kaye shared her son’s story with us, as well as encouraged, and promised us that everything would be fine. She wanted us to know that the NFED would be there to answer all the questions we might have now, as well as in the future.

Ever since we have been connected with the NFED, my wife and I have focused on guaranteeing our daughter’s healthy development. We want to ensure that she will grow up as any child will; but, the expenses of her condition have been enormous. Braces, dentures, partials, bone grafts, implants, you name it, but it’s for our daughter, our beautiful little girl!

Today, I support NFED to ease other parents’ and families’ woes and worries just as Mary Kaye did for us.

Entertainment Books as a Fundraiser

I give my time by fundraising because without the support and compassion of others, how would anyone overcome any difficulty set before him or her? It may be a small gesture in the overall scheme of things, but I have been selling “Entertainment Books” for decades. This might not bring in thousands of dollars at any one time; but these books provide a percentage of sales back to the NFED. I feel good about contributing my energy to the foundation that helped my family get through what could have been a rather difficult ordeal. Even the smallest contribution can make a big difference.

It is very rewarding to know that my limited efforts to fundraise for the National Foundation of Ectodermal Dysplasias are appreciated by strangers with whom we share a common link.

Editor’s Note:

Did this story inspire you to volunteer 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 NFED Blogs of Interest:

A Little Step May Be the Beginning of a Great Journey

Overwhelmed with Love and Belonging!

The True Meaning in Life is to Plant Trees Under Whose Shade You Never Expect to Sit

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One comment on “"Ripley's Believe it or Not" Helped my Family Find the NFED”

  1. 1
    A Lighthouse to Guide our Lifeboat | National Foundation for Ectodermal Dysplasias on September 29, 2015

    […] “Ripley’s Believe it or Not” Helped my Family Find the NFED […]

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