By Jennifer Hagerty Have you ever thought about how you can make a difference to the NFED and the families they serve? As a NFED family liaison, I have thought about it many times. I am a busy mom who is going to school as well as taking care of my two young boys. Needless to…
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…
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…
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…
Come Out and Welcome In
Late one evening while browsing my email, I discovered that someone had sent me a message using the “Contact Me” form on my blog, EEC Chick. So happy to find your blog and that you have dedicated time to help others with EEC. My wife and I just found last week she is carrying a…
Bruno's Golf Outing 10 September 2011!
Bruno’s 16th Golf Outing in Blue Island, IL sponsored by the Swierczeski family, to raise money for the National Foundation for Ectodermal Dysplasias was a huge success. The Swierczewski Family raised more than $11,000 with their golf outing on Saturday 10 Sept. It is all about spreading awareness, being visible & having fun doing so. Enjoy the pictures! Thanks to everyone…