Happy Spring! Or, at least we hope it arrives soon. What’s going on at the NFED? Needless to say, we are busy, busy, busy! I would like to share with you our progress towards our goals and other activities. Family Conference We are in full gear preparing for a great Family Conference in St. Louis,…
It’s All In the Genes
The pattern of inheritance for an ectodermal dysplasia is crucial to understand whether or not there is a risk for relatives of an affected individual to be affected.
Smiling About Snot and Spit
Liam is a happy little guy whose smile lights up the room – and your heart. Like most 11-month-olds, he drools constantly and often has a runny nose. Unlike most kiddos his age, that saliva and mucous is a welcome surprise for his parents.
Additional Information on Newborn XLHED Clinical Trial: XHLED Family in EU Needed for “Trial to Cure” Project
I want to share with you additional information as a follow-up to our announcement on Wednesday, January 6thabout the Newborn X-Linked Hypohidrotic Ectodermal Dysplasias (XLHED) Clinical Trial.
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…