Richter Receives NFED’s Highest Research Award

Our founder, Mary K. Richter, received a standing ovation as she was named the Kenneth S. Brown, M.D. Research Award recipient for her monumental impact on ectodermal dysplasias research.  Timothy Fete, M.D., M.P.H., from the Scientific Advisory Council (SAC), presented the award to Mary Kaye at the Saturday celebration dinner at the Family Conference in…

Conference Means Knowing My Son is Not Alone

by Jennifer Hagerty With the National Family Conference fast approaching, I find myself reflecting and thinking about how much fun it would be to attend. Joshua is almost four years old and already knows that he has ectodermal dysplasia/AEC syndrome. He does not quite understand it but he knows it makes strangers gawk, point, whisper,…

Rapp Hodgkin and Hay Wells: The Same Disorder?

Yes! Rapp Hodgkin syndrome (RHS) and Hay Wells syndrome (HWS) were initially named after the physicians who first described the disorders in the literature in 1968 and 1976, respectively.  Both pairs of physicians described an ectodermal dysplasia characterized by hair, nail, limb, and tooth abnormalities, as well by facial clefts. The only difference between the…

Hope… from a mouse

As I sat and listened to Dr. Maranke Koster speak, yesterday and this morning, about the process of turning skin cells into induced pluripotent stem (iPS) cells, I was beyond amazed… I was filled with hope.  Hope… from a mouse. If you had told me thirty years ago that I would one day look at…

Bios of our 2011 National Family Conference Speakers

You don’t want to miss their valuable information! Hope you will attend as many sessions as possible! Dr. Alanna F. Bree, M.D. Dr. Bree is a dermatologist in private practice at Dermatology Specialists of Houston. Formerly she was an Assistant Professor of Dermatology and Pediatrics at Baylor College of Medicine.  She graduated from Southern Illinois…

Why attend a Family Conference?

Perhaps you have wondered whether or not you should attend a family conference. Perhaps you have even wondered if there is any lasting value to setting aside three (or four) days in your already overbooked schedule in order to spend time with people you may never have met… And in response, I say a resounding,…