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…
A Different Normal: Living with a Chronic Condition.
Jack Kriz was our guest blogger on WebMD. Read Jack’s story in growing up with EEC syndrome and his motto of “Use What You Got.” His blog is the first of several we will be posting in the upcoming year in the Chronic Conditions blogs on WebMD as well as on Gateway to the NFED blog.
2011 Halloween Bash Update!
A while back, we posted the “Save the Date” information for the 11th Annual Halloween Bash, an evening to benefit the National Foundation for Ectodermal Dysplasias in New York City, NY on Thursday October 27th, 2011. Please, check out the complete invitation! Tell your friends about this great fundraising event! How about placing an ad in…
Irving, Texas Man Can’t Sweat, But It’s Cool By Him!
Lee Goggin was featured in an article in the September 5th Dallas Morning News issue. Texas had a brutally hot summer this year. Read how Lee survived the heat. What an inspiring story!