As many of you know, the NFED kids have a great time at Kays’ Kids Camp during conference! They create meaningful friendships, play, have fun, and get to enjoy moments with others without having to feel different from their peers. As many of you also know, it may be a difficult time financially to send…
Two Questions… How will you answer?
By Mario Adamo from Zurich, Switzerland Family Conference Volunteer in Columbus, Ohio Do you remember the movie “The Bucket List”? There were those two individuals, both condemned by cancer, sitting above a pyramid, talking about ancient beliefs. For every soul knocking on paradise’s door, the Gods held two questions: “Did you find joy in your…
Happy Holidays!
It is hard to believe we are just a few weeks away from starting a new year. Whew! The time certainly flies. When I look over 2015, I think of all of the wonderful things that occurred in this year and I am thankful for all of our blessings. You helped us accomplish all of…
Holiday Greetings to you!
Please click to watch our 2015 video. Wishing you a Happy Hanukkah, Merry Christmas & Happy Kwanzaa. Peace be with you in 2016.
Celebrating 15 Years of Halloween Bash Success
When Ryan was a year-and-a-half old, and was medically stable, Ruth and Keith Geismar started planning the very first fundraising event to benefit the NFED. Ruth wanted to give back to this organization that had embraced her family and Ryan. Now, we are close to wrapping up the NFED’s 15th annual Halloween Bash. We would…
I'm on My Way!
Good evening! I am in Hayes, Kansas and headed for Denver and then to Colorado Springs. I am on my way! We have Tim’s Expedition packed to the max and of course, full of my treats for the drive. We left last night after Tim got home, a little later than we hoped. The wind…
Thoughts from the International Conference on Ectodermal Dysplasias
In May I had the honor of representing the NFED at the 6th International Conference on Ectodermal Dysplasias. This conference was held in breathtaking Oslo, Norway on May 27-30. The sessions were both a wonderful opportunity to learn, and a way to network with experts on ectodermal dysplasias from around the world. There were 101 participants…
NFED Class of 2015– We Are So Proud!
We are excited for our 2015 graduates! Every one of you has accomplished great things in your lives and are sure to go on to be even greater. Congratulations Class of 2015! Enoch Carnahan Greenville, South Carolina Graduating from: Greer Middle College Charter High School Five things about me that I would like people to…