Colorado Trip, Day 8 (!!)- NFED Conference, Day 3: The Finale


Today started off with a photo shoot. Everyone from the conference was instructed to stand on the bridge that connects two buildings. We were all wearing our family conference t-shirts, with the exception of a rebellious few. Keep an eye on the NFED Facebook page for those pictures. After breakfast, Terri and I wo-manned the … Continue reading Colorado Trip, Day 8 (!!)- NFED Conference, Day 3: The Finale

 Colorado Trip, Day 7 – NFED Conference, Day 2


I'm running out of steam on this one blog post a day business! I didn't take many pictures today.     This morning we had a motivational speaker who was interesting. He actually has a child with a rare disease too (though not ectodermal dysplasia). He had some people get up and share their experiences which … Continue reading  Colorado Trip, Day 7 – NFED Conference, Day 2

Colorado Trip, Day 4 – Celestial Seasonings


Today we started off with a trip to Celestial Seasonings. It was not as fun as the Ben and Jerry's tour, but perhaps that's a given. It was nice though. Some of the interesting things I learned were: 1. Herbal tea is technically not tea if it doesn't contains actual tea leaves. It's an herbal … Continue reading Colorado Trip, Day 4 – Celestial Seasonings

Top 10* Most Common Ectodermal Dysplasias


Here's a list of the 10 most common kinds of ectodermal dysplasias among people who are registered with the NFED. I find it interesting that the largest group is actually "type unknown". When I was growing up, I knew about the NFED and a little about ectodermal dysplasias. From what I saw in the newsletters … Continue reading Top 10* Most Common Ectodermal Dysplasias