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…
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…
Volunteers are Love in Motion!
By Alanna F. Bree, M.D. Pediatric Dermatologist, A Children’s House for Pediatric Dermatology It has been an honor and a privilege to volunteer as a member and a secretary of the Scientific Advisory Council for the NFED. The organization is a true blessing to so many. They not only do an excellent job of supporting and advocating…
Be a Genie for the NFED
All of us at some time or another have wished for a genie. Rub the magic lamp and get three wishes. How easy would that be! Sadly enough, this doesn’t happen. Why is that? Could it be because we no longer believe in magic? What if we could borrow the magic lamp for even just…
I Want to Keep My HED
By Lindsey James I became a mother on April 22, 2008. I had spent nine months preparing myself for the most important responsibility I would ever have. I was a sponge, absorbing all the information about pregnancy and motherhood I possibly could. My pregnancy was pretty uneventful and my labor experience was a dream. Everything…