When you have a rare genetic disorder like ectodermal dysplasia, it’s possible that you will know more about your condition than a doctor or dentist. We know that it can be frustrating for you when you are the one seeking answers. With thousands of rare disorders, it’s not reasonable to assume a care provider will know…
"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…
Organizing Medical and Dental Information
It is a good idea for you to keep your medical information in a personal file. People tend to change physicians more frequently as jobs and insurances change. You may choose to enter medical or dental information in a laptop, or keep hard copies in a notebook or binder. Dating all of your entries will…
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….
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…
Success: The Best Kind of Revenge
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…