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 black lo-pumps. I tried on at least eleven different silver shoes—from flip flops to stilettos, and just could not find a pair that I was comfortable with. These little black ones were cute, comfy, and on clearance. I also found the black sweater on clearance. YAY!
Since I had the black sweater and shoes, I didn’t want to wear silver jewelry. So, my amazing friend Amanda loaned me her purple jewels. She proffered five sets of purple jewels, varied in hue and size. This tri-strand necklace had just the perfect combination of light and dark purple beads that it really pulled it together.
Great minds think alike, huh? My Mom chose to wear black and purple as well. Isn’t she beautiful?
I threatened to poke my sister, Denyse, in the eye if she wore purple, although it is HER favorite color. Seems she heeded the warning, as she chose this gorgeous black and white number. The flower on her hat, which was chosen by her daughter, was the perfect compliment! Guess I will be seeking fashion advice from my niece.
Denyse and I both have Ankyloblepharon-Ectodermal Defects-Cleft Lip and Palate (AEC) Syndrome (also known as Hay Wells Syndrome), which is one of the ectodermal dysplasias syndromes. AEC Syndrome is specifically characterized by tiny bands of skin that hold the eyelids together at birth, as well as cleft defects of the lip and/or palate. Most AEC patients also experience skin erosions, which can range in severity. Additionally, like other E.D. syndromes, it can affect the hair, teeth, nails, sweat glands, salivary glands, as well as other ectodermal structures.
We have been involved with the National Foundation for Ectodermal Dysplasias (NFED) since its inception in 1981. This year’s annual family conference was a special one, indeed. Not only were we celebrating the NFED’s thirtieth anniversary, we were having a Gala.
After thirty years, the founder and CEO of the NFED, Mary Kaye Richter, has retired. The Gala was a night of tribute to her. Words cannot express the debt of gratitude that is owed to this amazing woman who, from a humble farm kitchen, started a foundation that has the lives of thousands who have ectodermal dysplasias and their families. I was fortunate enough to grow up with the NFED, and can’t imagine life without it. To think that just 31 years ago, there were no answers for a family faced with the diagnosis, and now, answers are just a few mouse clicks away. I am forever indebted and deeply awed by the magnitude of change that Mary Kaye ignited, and deeply inspired by the power of ONE to make such a huge difference. The NFED Gala was such a fun night, and I am so glad we were able to attend.
I will be sharing more about this years annual family conference in another post.
Our last conference was in 2008. Read more about it!