In recent years, there has been a growing trend to create a “Gratitude Jar” as a visual reminder of the wonderful things in our lives. Every day (or as often as possible), you put in a note about something that happened that day that gives you gratitude and thanks. At the end of the year,…
Basile and Stratz Join Board of Directors
Corporate executives Krista Basile and Richard Stratz join the National Foundation for Ectodermal Dysplasias Board of Directors.
Bridges to Inspiration
I spent a good part of Sunday walking around Portland, Ore. and reflecting on the 2018 National Foundation for Ectodermal Dysplasias (NFED) Family Conference. People passing me likely thought I was in another world. I was smiling and laughing as I strolled along the river walk. One person stopped me and said, “Wow! You must…
Where will we be?
We are so EXCITED to announce where our next three Family Conference will be held! Last year, we were on the East Coast. This year, we went to the West Coast. Our next stop is…
This is Us
We are your NFED team! We’re a mighty crew of six women. We couldn’t be more different. And that’s a good thing! But we are the same in one way. The most important way. The six of us are passionate about families affected by ectodermal dysplasia and doing what we can to help you. Since we typically get to learn about you, we thought it was our time to share. This is us.
Building Your Legacy
I recently read a meme that said you only have 18 summers with your kids, enjoy every moment. This moved me and got me thinking about how time is precious and should be cherished with our loved ones while we are here on this Earth. I reflected on my life and started to think about what kind of impact I want to make on my family and others when I’m not here. What do I want my legacy to be?
Jacob Moss Photo Project Call To Action
Jacob Moss is looking for individuals with ectodermal dysplasia, ages 15-50, to participate in his photo project for his graduate thesis. His goal is to capture the diverse mix of people who happen to be affected by the various types of ectodermal dysplasia.
Welcoming New Volunteers to our Board and Council
We are happy to announce that Roy Moffitt has joined the NFED Board of Directors and Dr. Beau Meyer, a dental researcher, has joined the Scientific Advisory Council.