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Genetic Testing Offer
Males Affected by HED Needed for Research Project at the Family Conference!!! Dear NFED Family, In a research collaboration planned for the 2011 National Family Conference, Edimer Pharmaceutical, Inc....
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AEC and EEC Families: Dr. Colin E. Willoughby, prominent researcher @ our...
You Have the Opportunity to Share Your Eye Concerns With Researcher By Jack Kriz I am so excited! I mean really, really, excited! Dr. Colin E. Willoughby will attend this year’s National Family...
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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...
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Important: HED participants: Informed Consent Document & Medical Questionnaire
Attention HED Families participating in Research! There will be a meeting to inform participants about this research and answer any questions you may have on Thursday 21 July, 2011 from 5:30PM-6:30PM...
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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...
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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...
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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...
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Why You Should Care About the XLHED Research Study
By Mary K. Richter NFED Founder People often ask me what I think of the research underway using a protein replacement to minimize the effects of hypohidrotic ectodermal dysplasia. At this point in my...
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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...
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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...
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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...
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Greetings from the NFED
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...
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A Treatment for Corneal Erosions in EEC?
Corneal abnormalities are a major clinical issue encountered by patients affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. EEC is caused by dominant mutations in the p63 gene,...
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