10. Be inspired or be inspiring! 9. Have an experience you will never forget, like dancing Gangnam Style on stage with all your friends. 8. Meet the family liaisons and enjoy their opening ceremony antics! 7. Meet the NFED staff in person! 6. Show off your talents during the talent show! 5. Learn new ways to care for…
Many Hands Make the Work Light
If I heard my mom say it once, I heard it at least a thousand times growing up… “many hands make the work light.” It became a family mantra of sorts and instilled in me a lifelong sense of volunteerism. Mom also used to always say, “Although you may have nothing else to give, you…
A Chance Meeting Changed my Life!
By Frank Farrington, D.D.S., M.S. Affiliated with the Medical College of VCU, Dept. of Pediatric Dentistry, Richmond, VA Why have I stayed involved with the NFED and the Scientific Advisory Council, Patient Care Council, and the Board of Directors for so many years? The answer is very simple. When you are on the faculty of a…
She Was One of the Founding Families as a Toddler in 1981. Today, She’s an Advocate for the Community.
Hi there, My name is JoAnna Nix and I volunteered last fall to help represent the NFED at my local Combined Federal Campaign (CFC) and State Campaigns. The NFED is known as the Skin and Dental Dysfunction Foundation #10604 by the CFC. Being a government employee, I’ve seen that government workers really do care about their communities and want…
Dental Treatment Shopping
The most frequent questions, comments and challenges that the NFED staff hear are related to dental treatment, dental treatment access and finding a dentist who can provide the treatment. I don’t think that this has changed much since the foundation was started. We still get lots of calls saying that the dentist won’t provide treatment…
Why I Volunteered to Participate in the Edimer Research Trials
By Beth Orchard My husband and I enrolled our two-month-old son, Liam, in the XLHED Newborn Clinical Trial less than two weeks after he was born. Even before pregnancy I knew about the study and, if we had an affected son, would enroll him. There are many reasons but the greatest one was this: to give…
Together, We Will and Can Make a Difference!
By Julie Claeys When our son, Carver, was diagnosed in 1995 with hypohidrotic ectodermal dysplasia (HED) at just four months old, we found the NFED. I remember talking with Beverly from the foundation and her peaceful, calming voice assured me that they were there for us. It wasn’t long before I found myself selling raffle…
My Smile – 23 Years in the Making – Part 2
In case you missed it, my first blog post covered the initial planning stages of my dental implant process. Now friends, this was where the real fun began. My treatment plan included one upper jaw bone graft to build up bone density in my jaw, six upper implants that would eventually connect to a permanent…