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 […]
Read More Colorado Trip, Day 8 (!!)- NFED Conference, Day 3: The FinaleI’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 […]
Read More Colorado Trip, Day 7 – NFED Conference, Day 2Once again, I woke up bright and early. I guess I really am an east coast girl. Or perhaps I would just be a morning person if I lived here. Today was the official start of the NFED conference, even though I felt like it started on Tuesday evening when a bunch of us were […]
Read More Colorado Trip, Day 6 – NFED Conference, Day 1One of the reasons we came out to Colorado a bit early was because I volunteered to participate in a research study for EEC and AEC. It was really a minor sacrifice- I would let them take a small piece of my skin and they would grow it in a lab and study it. The […]
Read More Colorado Trip, Day 5 – Biopsy and StuffToday 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 […]
Read More Colorado Trip, Day 4 – Celestial SeasoningsThis morning I woke up at 3:30. I rolled over and went back to sleep for a bit, but the dark corners of my mind harbored questions about the day ahead… Would I be stricken with altitude sickness upon reaching the top of Pikes Peak? Would I lose control of my bike and plunge to […]
Read More Colorado Trip, Day 3 – Pikes Peak by BikeToday we started off with a quick stop to the marijuana dispensery. Well, just the outside… I guess they’re closed on Sundays. The highlight of today was visiting Garden of the Gods. We decided to take a Jeep tour so we could see more of the park and learn about the history and the geology. […]
Read More Colorado Trip, Day 2 – Garden of the GodsWe’re here! I said I would write each day, so here we go. I am currently sitting on the couch in our suite at the Best Western. Luxurious, I know. We’re only paying $40 for tonight because when we got here they did not have a reservation for us. Thanks a bunch, booking.com! Fortunately they […]
Read More Colorado Trip, Day 1 – Arrival
Uncommon Heather 