Orlando is a Great Family Destination

Orlando is a great family destination so plan your vacation to coincide with the NFED Family Conference. Many of you may be concerned about the heat and the humidty in Florida but all conference activities at the Buena Vista Palace and Spa are held indoors in climate controlled rooms. The only outdoor activity is an…

Finding Money to Help Pay Your Family Conference Expenses

With a little searching and networking you can find money to help you attend a National Family Conference.  Many families have been successful in obtaining funding from the sources below.  It takes internet searches, phone calls and persistence.  Call and ask about conference funding for families with special needs.  If you hit a roadblock, ask…

Meet Caitlin Sarubbi, Our Family Conference Motivational Speaker

Hello! My name is Caitlin Sarubbi, and I was born with ablepharon macrostomia.  This syndrome left me legally blind, partially hearing impaired and have undergone over sixty-two reconstructive surgeries to date.  However, 22 years later, I am an undergraduate at Harvard University, studying social and cognitive neuroscience, and a Paralympic ski racer, who competed in…

Family Conference Scholarships Available

Family Conference Scholarships Available Application Deadline: April 13, 2012 We know that attending the National Family Conference can be expensive. That’s why we offer scholarships for qualifying families who need financial assistance to attend the National Family Conference in Orlando, Florida this summer. These scholarships can include waived registration fees and/or hotel stay reimbursement. Preference…

Remembering Reverend Charles J. Sheffield

 Today, we remember with great admiration and gratitude, Reverend Charles J. Sheffield, who passed away March 13th in Florida.  Reverend Sheffield was instrumental in the early years of the NFED and was one of three people who signed our articles of incorporation. In 1981, when Mary Kaye Richter was forming the NFED, Pastor Sheffield was…

Rapp Hodgkin and Hay Wells: The Same Disorder?

Yes! Rapp Hodgkin syndrome (RHS) and Hay Wells syndrome (HWS) were initially named after the physicians who first described the disorders in the literature in 1968 and 1976, respectively.  Both pairs of physicians described an ectodermal dysplasia characterized by hair, nail, limb, and tooth abnormalities, as well by facial clefts. The only difference between the…