Each year, we hold our Family Conference that provides life-changing experiences for our families at the National Foundation for Ectodermal Dysplasias (NFED). Annually, 300 to 400 people from all over the world and the U.S. get to experience that they are no longer alone. They get to connect with other families and talk to doctors…
Missing Teeth, Missing Benefits
It’s common for someone to be missing a tooth or even two teeth. Some studies report about 20% of all adults are congenitally missing at least one tooth. More than 5% of us lack one or more second premolars or upper second (lateral) incisors. Though, numerous missing teeth, is less common. Leads to Diagnosis When…
Life with Ectodermal Dysplasia
By Julie Kennedy Thirty years ago, my family began the journey called, “life with ectodermal dysplasia.” We didn’t know it at the time, but my husband had tooth and nail syndrome. Many in his family had it, but it was just shrugged off as weird shaped and missing teeth, a “Kennedy Thing.” It was not discussed…
Keep on Smiling: The Story of Lucy’s First Surgery
By Lucy Davies January 27th, 2017 is a date I will never forget. To most people, it marked the one week anniversary of Donald Trump’s inauguration, but I had something far more personal scheduled for that day – my first dental implant surgery. When growing up with ectodermal dysplasia, “implants” was a word constantly thrown…
Expanding Our Volunteer Team in 2017
Service and giving are qualities that are greatly cherished by all of us at the NFED. You, as a volunteer, help our organization by lending a kind helping hand – and our only payment to you are wages of love, gratitude and knowing that you are making a significant impact on lives. Everyone has such busy…
Our Voice on Capitol Hill
Becky Abbott is leading efforts to help NFED families understand their insurance benefits and educate legislators for coverage for ectodermal dysplasias.
Collaborating With Friends Globally
By Mary Fete Here it is November with the holidays just around the corner. For you, I am sure that it has been a busy fall. It is always so hectic getting the kids back to school and/or working on the end of the year work commitments. Fall is rapidly ending (although the weather in…
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…