By Beth Orchard My husband and I enrolled our two-month-old son, Liam, in the XLHED Newborn Clinical Trial less than two weeks after he was born. Even before pregnancy I knew about the study and, if we had an affected son, would enroll him. There are many reasons but the greatest one was this: to give…
Together, We Will and Can Make a Difference!
By Julie Claeys When our son, Carver, was diagnosed in 1995 with hypohidrotic ectodermal dysplasia (HED) at just four months old, we found the NFED. I remember talking with Beverly from the foundation and her peaceful, calming voice assured me that they were there for us. It wasn’t long before I found myself selling raffle…
My Smile – 23 Years in the Making – Part 2
In case you missed it, my first blog post covered the initial planning stages of my dental implant process. Now friends, this was where the real fun began. My treatment plan included one upper jaw bone graft to build up bone density in my jaw, six upper implants that would eventually connect to a permanent…
Volunteers are Love in Motion!
By Alanna F. Bree, M.D. Pediatric Dermatologist, A Children’s House for Pediatric Dermatology It has been an honor and a privilege to volunteer as a member and a secretary of the Scientific Advisory Council for the NFED. The organization is a true blessing to so many. They not only do an excellent job of supporting and advocating…
Finding Strength in Moments of Pain
By Acacia Hathaway When my daughter, Ella, is older I will tell her the heart touching story of her first birthday and why I chose butterflies as her theme. She will begin to understand that she was strong from the beginning. She has taught me what strength really is. When Ella was almost a year…
Be a Genie for the NFED
All of us at some time or another have wished for a genie. Rub the magic lamp and get three wishes. How easy would that be! Sadly enough, this doesn’t happen. Why is that? Could it be because we no longer believe in magic? What if we could borrow the magic lamp for even just…
Come Out and Welcome In
Late one evening while browsing my email, I discovered that someone had sent me a message using the “Contact Me” form on my blog, EEC Chick. So happy to find your blog and that you have dedicated time to help others with EEC. My wife and I just found last week she is carrying a…
My Smile – 23 Years in the Making
By Jacob Moss On November 3, 2014, I completed my dental implant process. For the first time in my life I had a “permanent” set of teeth. As a 23-year-old man with hypohidrotic ectodermal dysplasia, permanent teeth had always been an abstract concept to me. The process was long and, at times, difficult; but now…