It’s definitely a busy summer for the National Foundation for Ectodermal Dysplasias (NFED)! If you follow our communications, you know we are going to be in Washington D.C. in July for the Family Conference and a historic first, Ectodermal Dysplasias Advocacy Day on Capitol Hill. Those are both incredibly important and major events for us….
Webinar: Advocating for Ectodermal Dysplasias
Presenters – Becky Abbott and Beth Pond, Chairs, NFED Advocacy Committee This webinar took place on Tuesday, May 16, 2017 and was recorded. Our advocacy goal is to get a federal law passed that would guarantee that insurance companies would be mandated to pay health insurance benefits for necessary medical care and treatment due to…
Family Conference Sponsors Needed
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.