by Patrick Brenner High school is rough. With pressure from your peers to fit in, with pressure from your parents to behave, with pressure from the school to study hard, it’s a miracle any of us made it out alive. Some of us had an exceptionally difficult experience. I consider myself one of those. Back…
We Are Flying High!
We just wrapped another life-changing, heartwarming, spirit-lifting Family Conference in St. Louis! What an amazing conference from start to finish. The conference started off with Jack Kriz riding his bike in from Kansas City. He rode 288 miles of bike riding in the awful heat. What dedication to do this ride to raise money for the…
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…
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…
Taking Ectodermal Dysplasias to the Hill
By Becky Abbott As a member of the ectodermal dysplasia community, it has been frustrating, to say the least, having to deal with insurance, human resource administration, and politicians. We have submitted claims to insurance, had them denied, submitted again, denied again and been through the vicious circle so many times that we didn’t know where to…
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…
I Will Never Have a Perfect Smile!
by Alex Gaillard I have ectodermal dysplasia, and for me, that meant that I would never have a perfect smile. Since growing up, I’ve always known there was something off about my teeth. They didn’t grow in like my friends’. There were too many holes and not enough teeth growing in. My dentist noticed this in…