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!
Walk for Ectodermal Dysplasias 8 October 2011
Our good friends of Delta Theta Tau Sority, Inc are hosting a walk to benefit the NFED on October 8th, 2011 in Bethel, MO at 7AM. Registration and waiver due before September 30, 2011. $15 Entry fee includes t-shirt.
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…
Introducing Judy Blase Woodruff, executive director of the NFED
Please give a big NFED welcome to our new executive director, Judy Blase Woodruff! Many of you got to meet her at the Family Conference. We are excited to have her as the leader of our team. Be sure and email her a note or post a comment here to introduce yourself and say hello….