Thank you so much to everyone who participated in our 35th Anniversary Celebration dinner! We are happy to say we surpassed our goal of $50,000 by raising more than $62,000 for our mission. Thank you all for your support and for making the event a success. We had more than 250 attendees who enjoyed our silent auction, mystery…
Seven Honored for Service to Ectodermal Dysplasias Community
We were proud to recognize the following individuals and families for the amazing contributions they have made to families affected by ectodermal dysplasias and the NFED. We honored them at our 35th Anniversary Celebration on July 22nd in St. Louis. Outstanding Service Award – Timothy J. Fete, M.D., M.P.H. For 23 years, Dr. Time Fete has…
Exciting Announcement! The NFED Qualified
By Lea Richardson What for you may ask? We are pleased to announce that the NFED has been approved as an official Certifying Organization for The President’s Volunteer Service Award (PVSA). The Bureau of Labor Statistics estimates the value of volunteer time to be $23.56 per hour. Our helping hands have made an immeasurable impact…
Volunteer Spotlight: Our Website Committee
Building an all-new NFED.org is a major undertaking! Luckily, we have five volunteers who are advising us at every step of the way. The research phase of the project began in June of 2015. We are excited about how the site is developing. The big reveal will be in November. For their hard work and…
Why Not?
By Janet Johnson Family Liaison for Nevada & Utah and more! I have been known to some colleagues to be a pointer, not a painter. This short blog is an attempt to answer the question “Why I volunteer for the NFED?” I truly believe the answer to that question is, “Why not?” My name is…
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!…
Involvement: Get started today!
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,…