By David Sanmiguel The NFED has been a very important part of my family’s life, since the day my daughters were diagnosed. The moment my family and I became members of this great organization we only received good things, along with a warm welcome, understanding, help, information and great times. Simply put, everything has been wonderful. Our…
"Ripley's Believe it or Not" Helped my Family Find the NFED
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…
Camp Discovery to the Rescue!
By Lindsey Higgins When I was six years old, I was officially diagnosed with ectrodactyly-ectodermal dysplasia-cleft lip/palate syndrome, also referred to as EEC syndrome. As most of you already know, EEC effects one’s teeth, hair, nails, sweat glands, tear ducts and skin. After feeling alone and confused most of my life, and uncomfortable in my…
The NFED Changed the Dialogue About our Son's Condition
By Marci Mortensen I was seven months pregnant with my second child when I first heard the words ectodermal dysplasia. Our first son Sawyer was 20 months old at the time. Although he was slightly underweight and susceptible to frequent respiratory infections, he was abundantly active and happy, and certainly giving these first time parents…
NFED In Our Back Yard!
By Lisa Jonak My son Cory, was about 6 years old before he was officially diagnosed with ectodermal dysplasia during an NFED family conference in Collinsville, IL. Ironically, the NFED was basically located in our back yard. I did not realize how lucky we were to have this resource so close. They helped us find a…
Creating Connections of Hope and Comfort
By Rachel Buerman, NFED Liaison I am a pharmacist and my husband is a special education teacher with a license for both learning disabilities and emotional behavior disorders. For both of us it is important that we are comfortable reading, understanding and analyzing research articles and clinical trials that are published in professional journals. We…
A Mom's Take on the Dental Implant Journey
By Tina Moss Being a mother is challenging. Being the mother of a child with hypohidrotic ectodermal dysplasia (HED) takes challenging to another level. After our son Jacob was diagnosed with HED, his father and I knew that he would require a lot of dental work culminating in implants when he was a young adult….
Every Moment Has A Meaning
By Cory Jonak, Former Intern & Current Volunteer Throughout the course of our lives, we all will inevitably experience moments that have lasting impacts on us. While some of these moments are explicit and stand out, others can be more subtle and happen in an instant. However, no matter how small or big these moments,…