By Terri Matus, Grandma of Allyson Kelso, Member, Family Support Council and Co-Chair for Rally for Ally There are many reasons to volunteer one’s time for an organization. The obvious one is to be helpful and to assist others in order to enhance the programs provided by the organization, namely, the NFED. I like to think…
We are Family! My Brothers, Sisters and Me!
By Chris and DeAnn Huxman In 2001, our second son, Tyler, was born with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. We had never heard of EEC, had no information about it, and had no idea what the future would hold. We didn’t know where to turn or where to find information. While searching the web for anything about EEC,…
Our 2016 Send a Kid to Camp Campaign is Live!
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…
"Cookies for a Cure"
Volunteering is a labor of love. Volunteering together as a family helps kids learn that they can make a positive difference in the lives of others. It is a great way to teach the importance of becoming involved and giving back to our NFED community. It gives children a sense of responsibility, compassion and…
Be the Change! Build our Community!
By Lea Richardson, Community Engagement Manager The NFED recently joined Pinterest and I have been amazed at the number of inspirational quotes for and about volunteers. Some are so great in fact, that I thought I’d share some with you. Some quotes are words of wisdom while others can be attributed to the wise people…
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…
The Choice is Obvious! Because I Can!
By Kristin Matus Kelso “Do all the good you can. By all the means you can. In all the ways you can. In all the places you can. At all the times you can. To all the people you can. As long as ever you can.” ― John Wesley I’m often asked why…
Sweat It Out: The Duke Family’s Journey
By Jamie Duke I learned about hypohydriotic ectodermal dysplasia over two years ago when my son, Nicholas, was diagnosed with XLHED. I knew he couldn’t sweat, but I didn’t truly know and understand until he asked me why my skin was wet after I came back from a run. That hit me hard. I looked…