Good evening, Whew! Crazy, busy day in the office today. We are on the home stretch, moving full force ahead, getting the final details together for Family Conference next week! Can you imagine five women in the office along with two interns making sure all the I’s are dotted and t’s crossed? I bet you…
A Little About Me. A Lot About Family.
Greetings! I hope you had a wonderful holiday weekend full of lots of love, laughter and good time with family and friends. Here in the Midwest, we had cool temperatures on Friday and Saturday but we’re back to heat and humidity today. I love the 4th of July weekend. Usually, it means good barbecue, spending…
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…
Free Genetic Counseling Services for Families Affected by HED or XLHED
Learn More on Live Chat – Thursday, May 29 on Our Facebook Page – 6:30 – 7:30 p.m. Central Time Dear NFED Families, Edimer Pharmaceuticals has teamed up with Informed DNA to provide free genetic counseling services to families who have or suspect to have hypohidrotic ectodermal dysplasia (HED) or x-linked hypohidrotic ectodermal dysplasia (XLHED). Informed DNA…
An Open Letter to Mr. Shaquille Neal
April 28, 2014 Dear Mr. O’Neal, All of us at the National Foundation for Ectodermal Dysplasias (NFED) are terribly disappointed by the hurtful image that you and others recently posted on social media about a member of our family, Jahmel Binion, who is affected by ectodermal dysplasia. Individuals affected by these rare, genetic conditions often…
Welcome to the NFED Family Liaison Blog!
by Heather McKelvie The liaisons are taking over the blog! We’re planning to use the blog to raise awareness of ectodermal dysplasias and to share our stories and experiences in a place where you can easily search and find topics that are important to you. We intend to promote NFED events (especially the Family Conference),…
Missing Orlando This Year
Hello from the Wilson family! We are excited to hear the 2012 NFED Conference is in the great place of Orlando, FL. You will have so much fun at the conference and experiencing the area. We have made great and lasting friendships at NFED events. I urge all that can attend to do so. We had…
Not a Family Conference…It's a Family Reunion
by Dee Dee Olsen I attended our first National Family Conference when our daughter, Jade, was two years old. I have never been so affected by such an outpouring of emotion, support, and information. It truly was remarkable. I vowed to make Family Conference an annual event, which it has been for eight years. The…