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…
Things to do in the hotel during Conference
Curious about what you can do during your spare time at the Family Conference. They offer: Business center. Need to work for a few hours while at the conference. Here is what the business center has to offer: Audio/Visual Equipment Rental Complimentary Printing Service Fax Meeting Rooms Photo Copying Service ($0.10) Printer Indoor Pool.Too hot…
Things to do in Chesterfield
Sachs Butterfly House at Faust Park (6 minutes from hotel): More than a thousand live tropical butterflies fly freely in the glass conservatory at the Sophia M. Sachs Butterfly House. Watch a butterfly emerge from a chrysalis right before your eyes. Or go outside and visit native and migrating species in the Butterfly Garden. (*$6 general…
NFED Family Conference: Our Family Reunion
by Rachel Buerman Every year, we pack up the family and journey to the NFED Family Conference. We are not natural born travelers. In fact, when it comes to travel we might just be the next National Lampoons movie cast. Despite our chaotic travel skills, one thing is certain, the NFED Conference is always worth…
A Treatment for Corneal Erosions in EEC?
Corneal abnormalities are a major clinical issue encountered by patients affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. EEC is caused by dominant mutations in the p63 gene, meaning that EEC patients have one copy of the normal p63 gene and one copy of the mutant p63 gene. It has been suspected that removing the mutant p63…