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…
Ectodermal Dysplasias Dental Treatment Center Opens in New York
Families in New York now have a National Foundation for Ectodermal Dysplasias (NFED) Dental Treatment Center in their community. We are excited to announce our new partnership with the New York Center for Orthognathic and Maxillofacial Surgery (NYCOMS) to provide quality dental care and more affordable costs for individuals affected by ectodermal dysplasias. Helping families affected…
An Anniversary Gift for You
As you know, in 2016 the National Foundation for Ectodermal Dysplasias (NFED) community is celebrating our 35 anniversary! This year, we celebrate 35 years of NFED success. Over the years we have added tremendously to the body of knowledge of ectodermal dysplasias, made great strides in treatment and have had tremendous research successes. Thirty-five years…
"A Cool Experience"
By Liz Timmerman, mother of 2 year old Violet from Michigan. Just over a year ago, my youngest daughter was diagnosed with HED at the age of one years old. The first year of her life was filled with many challenges and I was seriously starting to doubt my abilities as a mother because my…
Volunteers Helped Run Family Conference
by Lea Richardson Our Volunteer Spotlight this month is the Family Conference Committee and all of the Family Conference volunteers. They pitched in and helped with Setting up and taking down, Manning the registration, promotional items, volunteer and fundraising tables, Facilitating and presenting in Workshops, Monitoring the Silent auction and distributing the mystery bags, Executing the Create-a-Smile, Taking…
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…
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…