By Stanley Zwirn Our beautiful little girl was born in the month of May. As time wore on, we noticed that at 18 months of age, she did not have any teeth and had a terrible time with the heat. With recommendation from our older son’s pediatric dentist, we went to the UCONN Health Center…
I'm on My Way!
Good evening! I am in Hayes, Kansas and headed for Denver and then to Colorado Springs. I am on my way! We have Tim’s Expedition packed to the max and of course, full of my treats for the drive. We left last night after Tim got home, a little later than we hoped. The wind…
Growth and Nutrition for Children with Ectodermal Dysplasias
(This is an excerpt from A Family Guide to the Ectodermal Dysplasias Syndromes, published by the NFED.) Growth abnormalities are common in children with ectodermal dysplasias. Weight deficits are present at an early age and persist throughout adolescence. Height deficits are seen primarily in children with ectodermal dysplasias other than hypohidrotic ectodermal dysplasia (HED). Parents…
Four Days of Normalcy
By Rachel Dahler Every summer during the third week of July, the NFED hosts a National Family Conference. This has always been my favorite time of year. I went to my first Conference in 1995 when I was six and have been to 15 since. I can remember when I was younger, printing out countdown…
Conference – Where You Can Always Come Home to Your NFED Family
This year’s Family Conference is a Homecoming, meaning a place where you can come home to your NFED family. You will find people who will welcome you with open arms. You can rekindle friendships made long ago. You’ll remember the fun had at previous Conferences and make new memories. Home is the soft place you…
What do your Family Conference fees actually pay for?
Basically, all your fees pay for is your food. We solicit sponsors, grants and use general donations to fund room rentals, speakers’ (12-15 unbelievable docs and dentists donate their time each year) and staff travel, scholarship recipients, off site activities, AV rental and childcare costs.The NFED absorbs 75% of the cost of the event. The 2012…