Planning a party or get together is work. Planning one for people you may have never met before can be even more daunting! But not for two of our Family Liaisons who hosted our inaugural NFED @Home events. These are our newly established informal family gatherings that we hope to take place throughout the United States. Julie and…
Welcome Home!
By Sue Kluzek I don’t know about you, but I am getting very excited about our NFED Family Conference this summer! It’s an exciting time for all of us. We (the NFED) are celebrating our 35th anniversary. We have new programming and a new format for some of the conference. It’s going to be great!…
Pen Pals Across the Pond!
By Peter Brennan New South Wales, Australia When our children, Alice and Tom, were born, we were fairly sure where the parenting phase of our lives would take us. We would live in our little house in Sydney. Our children would go to the local school. We would celebrate birthdays and the holidays. We thought…
15 Reasons to Attend Family Conference
I could list way more than 15 reasons why you join meet us in St. Louis this July. But, this list will get you started. Tour St. Louis: Did you know St. Louis has cheese you can get nowhere else? Refresh and Recharge: Take a few days off from your busy schedule and relax and…
When Life throws you a Lemon, make Lemonade!
By Henry and Catherine Bourgin Twelve-year old Henry is affected by XLHED, as is his mom, Catherine. They live in McLean, VA. Henry would like to share his thoughts on having a lemonade stand with baked goods during summer break: “When I’m at the lemonade stand, we like to talk to each other and when other people come we’ll have conversations….
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…
Fulfilled by Fundraising for Our NFED Family
By Rich and Aimee Klinger We packed our four children and luggage into our nine-passenger suburban on Sunday July 22, 2012 and headed south from our home in Halifax, PA. As we departed, we were skeptical about our adventure. We had traveled 1050 miles in approximately 18 hours to Orlando, Florida to attend our first NFED Family Conference. We…
Camp Discovery to the Rescue!
By Lindsey Higgins When I was six years old, I was officially diagnosed with ectrodactyly-ectodermal dysplasia-cleft lip/palate syndrome, also referred to as EEC syndrome. As most of you already know, EEC effects one’s teeth, hair, nails, sweat glands, tear ducts and skin. After feeling alone and confused most of my life, and uncomfortable in my…