Our office volunteers show up on short notice to fold letters from appeals to special events, to stuff and address thousands of envelopes we mail each year. They relentlessly give of their time and help wherever needed which makes a great difference for our staff. They help with creating silent auction baskets, copying, filing, folding…
We Volunteer So Others Don’t Feel Lost
by James Kluzek We were asked why we volunteer for the NFED. It all started November 16, 2000 when our daughter, Christina, was born with a genetic disorder called Goltz syndrome. This day changed our lives forever. We had never heard of this syndrome and more importantly most of our doctors knew nothing about it either….
35th Anniversary Celebration: A Magical Night for the NFED
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…
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…
Creating Connections of Hope and Comfort
By Rachel Buerman, NFED Liaison I am a pharmacist and my husband is a special education teacher with a license for both learning disabilities and emotional behavior disorders. For both of us it is important that we are comfortable reading, understanding and analyzing research articles and clinical trials that are published in professional journals. We…