CRITICAL UPDATE: NEWBORN XLHED CLINICAL TRIAL

I want to share with you, our families, donors and friends, the latest developments regarding the Newborn X-Linked Hypohidrotic Ectodermal Dysplasia (XLHED) Clinical Trial being conducted by Edimer Pharmaceuticals. It has now been two years and three months since the first baby boy affected by XLHED received EDI200, a recombinant protein to replace the one…

Geismar Family Gives Back with Annual Halloween Bash

By Alice Geismar Seventeen years ago this November, my husband, Bruce and I were awaiting the birth of our second grandchild. Our first grandson, Jack was almost two and we were enlisted to watch him while Ruth and Keith went to the hospital. It was immediately apparent that Ryan had serious problems. He looked like…

Sharing the Excitement of Research

By Maranke Koster, Ph. D. I first became aware of the NFED, and of ectodermal dysplasias, while investigating the role of a gene by the name of p63. The striking similarities between mice lacking a functional p63 gene and individuals affected by ectodermal dysplasias suggested a role for p63 in these disorders. Sure enough, it…

Why I Volunteered to Participate in the Edimer Research Trials

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…

Four Research Opportunities at the National Family Conference

Families attending the 2012 National Family Conference in Orlando, July 18-21, have the opportunity to volunteer for the four projects listed below. To participate, sign-up on the 2012 national family conference registration form. You will receive your assigned research times when you check-in at registration on Wednesday, July 18th at the conference. Questions? Email Mary…

A Doc’s Perspective on the NFED Family Reunion (aka Family Conference)

By Alanna F. Bree, M.D., NFED Scientific Advisory Council Attending the NFED Family Conferences are almost like a family reunion for me.  Even though I am not related to anyone who attends, the people I have met through the NFED have become like an extended family to me.  This includes babies, children & adults affected by…