As I mentioned previously, we attend a charity golf tournament every year, to benefit the NFED. I was sorting through some golf tournament photos, and was just amazed by how…
My family of four is registered to walk in the first annual National Foundation for Ectodermal Dysplasias Don't Sweat It Walk on June 30th. We are asking everyone to consider…
As you may know, my son and I are both affected by a form of Ectodermal Dysplasia. This year, we are excited to participate in our first annual Don’t Sweat…
You know how Popeye always has his right eye squinched shut? My little Mister does the same thing, ANY time bright lights (camera flashes, sunlight) hit his eyes… <—Exploring Missouri’s…
Mister and I recently had skin biopsies done as part of a scientific research project, which is aimed at finding a cure for the skin erosion's associated with Hay Wells…
As some of you may know, I used causes.com on Facebook to raise funds for the NFED for my birthday. I was pretty impressed with the $200 something I raised…