Meet Our Families

It was 1981. Gloria and Stanley Zwirn were watching the TV show “That’s Incredible” on TV. They never dreamt that it would lead them to finding other families who were affected by ectodermal dysplasia. But it did.

The old TV episode featured a young boy who received a cool suit from NASA because he was affected by hypohidrotic ectodermal dysplasia and could not sweat. The show's producers received numerous calls from families with children affected by the same condition. One of the mothers, Mary Kaye Richter, was organizing a support group and asked the producers to share her information with the families who called. The Zwirns wrote to her about their daughter and began a relationship that continues today with the NFED.

In their first letter to Mary Kaye, the Zwirns chronicled their then 4-year-old daughter's life to date. They described Jennifer as a high strung child who came screaming into the world. When Jennifer was 17 months old, a team of care providers at the University of Connecticut Health Center observed her facial characteristics, thin blonde hair, very pale eyebrows, extremely dry skin, conical shaped teeth and confirmed that she was affected by hypohidrotic ectodermal dysplasia.

Between the ages of 2 and 3, Jennifer was uncooperative with any dental program that her parents attempted. At age 3, their spirited daughter connected with a new dentist and received her first pair of dentures at age 4. Her parents described the progress in that first letter to the NFED:

"Her initial reaction to her new teeth was one of pure joy. She was no longer "different". A rather shy, self-conscious little girl became a social butterfly and everybody's friend. Her first day back at nursery school was like the return of a conquering hero–everyone gathered around Jennifer to see her new smile. Since then, we have noted a tremendous personality change for the better. She isn't shy; doesn’t cry; eats everything; and is very proud of herself. SO ARE WE!"

The Zwirn's little girl, Jennifer, blossomed into a 30–year–old woman who is training 400 high school students in Manhattan, New York, to be leaders.

"I love what I do because I have direct service and contact with young people, aka my kids!" says Jennifer.

It comes as no surprise that Jennifer's parents raised her to believe in the importance of education. The bright and bubbly educator, earned her bachelors in English and secondary education and her Masters degree in gender studies. She dreams of one day starting her own nonprofit organization to send under–served young women to four–year colleges. But first, the four–time NFED scholarship winner is thinking about earning her PhD in women's studies.

"The NFED scholarships helped to make my education possible. I was raised to understand that you can never know enough; you should always be learning. NFED has made that possible for me," Zwirn says.

Jennifer says that she has been most affected by the dental aspect of her condition.

"I can handle the ‘no sweating/always staying hydrated’ thing, but the poking and prodding of my mouth over the last 25+ years can get to a person now and then!" says Jennifer. Just recently, Jennifer had dental implant surgery, which the NFED is helping to pay for through the Treatment Assistance Program.

"It's always been a dream of mine to have my own teeth. I want to be like everyone else, and leave them in at night, and brush my entire mouth at once. Working through dental implants as an adult is difficult because children adjust to changes so much easier, but, and not that I want to wish time away, but I cannot wait for the final results. Finally, a mouthful I can call mine!"

Whether it's talking about her nephew, Jack, or selling raffle tickets at the NFED Halloween Bash in New York, she speaks with passion and beams her infectious smile. This once high strung toddler knows exactly who she is. She is a woman with clear goals, ambition and a strong sense of self.

"Teeth aside, you have a voice and what that voice has the power to say and share with others is amazing. No one can ever take that from you, no matter what you do or don't have in your mouth, on your head, or body. You are beautiful and special and amazing because you are YOU. No birth defect can change that. In fact, it helps define you by giving you added strength and perseverance."

The students in Manhattan are lucky to have a mentor who's leading by example. Now, that's incredible.

More Stories