By Kayte Speegle Hi. My name is Kayte. I am one of six in my family affected by hypohidrotic ectodermal dysplasia. I would love to say that it is “nothing,” but it is definitely a lot of something. My grandpa was the first of the family to be diagnosed with ectodermal dysplasia. Then, there was…
A Friend Diagnosed My Grandson
By Nancy Jane Johnson I’d like you to meet Ethan Noble. He lives in Ellensburg, a small college town in the middle of Wash. which has quite distinctive seasons, snow in winter, 100+ degrees for a short time in summer and lots of wind! Ethan was born in York, Maine and is almost 15. He…
Spot the Difference?
Mary Emma Roberts is now 12 inches of hair lighter! Mary Emma is six years old, but she began donating her hair to charities two years ago when she was just four. Already at this age, Mary Emma had eight inches of hair to spare. So, Mom, Kara Roberts, decided the time had come to…
Wigs
Some people are comfortable with their appearance and may find a wig unnecessary. Others choose to wear wigs to improve self-image and increase self-confidence in social situations. The decision to wear a wig is, and should be, a personal choice. A child should not be forced to wear a wig. Providing the option to wear…
The Battle of Hair
By Terri Andrews When I was a little girl, my hair was slow to come in and grow. Once it did grow, it was so blonde it looked white and stuck up everywhere. It was hard to manage. My momma would put Vaseline on my hair just to try to lay it down. When I…
Are you a Repeat Offender?
Charley Richter has attended 27 NFED National Family Conferences and Anil and Sean Vora have both attended 25. How close are you to reaching them? We will recognize our “repeat offenders” during Wednesday’s opening session. If you have attended at least five conferences, be prepared to be recognized!
Meet the People Who Helped Plan the 2012 Fam Con
2012 Family Conference Committee July 18-21, 2012 Orlando, Florida Our Family Conference Committee offered lots of great ideas for this year’s National Family Conference in Orlando. Because of their input, we have added a track for young adults and a “buddy” program where we will pair up veteran families with new families at the conference….
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…