Wow! What a great Family Conference! If you attended, what was your favorite part? Mine was spending time with all of you, the families. It was gratifying to see all of the families and kiddos hanging out, having fun and sharing tips and stories. The conference was full of good times, with lots of laughter,…
Cool Activities for a Hot Summer
Summer time is upon us and that means there will be some incredibly hot days. For those of us that can’t sweat properly, it’s especially important to have some cool activities for those hot summer days. We allowed Mister, our 6 year old that is affected by Hay Wells Syndrome, to join the swim team. …
Keeping My Cool in Heated Situations
It’s field day! Out in the fresh grass while the sun blazes down from a perfect blue sky, I feel dizzy with excitement. Our team is doing well in the relay races and I’m having fun being outside the classroom. Suddenly, my teacher pulls me aside. “You’re bright red!” She looks panicked. “Come with me,…
Getting Ready for Family Conference
Good evening, Whew! Crazy, busy day in the office today. We are on the home stretch, moving full force ahead, getting the final details together for Family Conference next week! Can you imagine five women in the office along with two interns making sure all the I’s are dotted and t’s crossed? I bet you…
A Little About Me. A Lot About Family.
Greetings! I hope you had a wonderful holiday weekend full of lots of love, laughter and good time with family and friends. Here in the Midwest, we had cool temperatures on Friday and Saturday but we’re back to heat and humidity today. I love the 4th of July weekend. Usually, it means good barbecue, spending…
Conference – Where You Can Always Come Home to Your NFED Family
This year’s Family Conference is a Homecoming, meaning a place where you can come home to your NFED family. You will find people who will welcome you with open arms. You can rekindle friendships made long ago. You’ll remember the fun had at previous Conferences and make new memories. Home is the soft place you…
Why You Should Care About the XLHED Research Study
By Mary K. Richter NFED Founder People often ask me what I think of the research underway using a protein replacement to minimize the effects of hypohidrotic ectodermal dysplasia. At this point in my life, I realize that my response would change dependent upon the stage of life in which I or my son was….
Homecoming
If you’ve ever been away from home and your loved ones for a while, you know how good it feels to return. Whether it’s been a month or a year, the sense of familiarity remains and it feels like no time has passed at all. Attending the annual NFED Family Conference is like that. Even if it’s…