Posted inFamily
Wordless Wednesday- Growth by the Golf Flag
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…
Seeking Sponsors NFED #walk
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…
Don’t Sweat It Walk 2012
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…
Posted inFamily
Foto Friday- Popeye
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…
Posted inHealth
Foto Friday- Skin for Science
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…
Posted inFashion
The Dress and The Gala
So, I promised photos of my purple dress that I asked ya’ll about… so, here is one of me and Hubs. I decided to go with a black sweater and…
Creative Fundraising for cHAIRity
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…
Posted inFitness
Getting Fit- No Sweat
One of the challenges that I face in my quest of Getting Fit is the fact that I am affected by Hay Wells Syndrome (HWS).
My Birthday Wish
Today is my birthday, and I am now 35. Yes, I walked across the bridge from being a young adult to being middle aged. Guess what… I don’t feel any…
Posted inLifestyle
Help Me Help Others Smile
As many of you know, the NFED is an organization that is VERY near to my heart. As one of the founding members of the NFED, I have often thought…