By Alice Geismar Seventeen years ago this November, my husband, Bruce and I were awaiting the birth of our second grandchild. Our first grandson, Jack was almost two and we were enlisted to watch him while Ruth and Keith went to the hospital. It was immediately apparent that Ryan had serious problems. He looked like…
A Little Step May Be the Beginning of a Great Journey!
By Jennifer Hagerty Have you ever thought about how you can make a difference to the NFED and the families they serve? As a NFED family liaison, I have thought about it many times. I am a busy mom who is going to school as well as taking care of my two young boys. Needless to…
Support Each Other: We are Family!
By Josh Long Why do we donate our time and money to the NFED? Because the NFED is family! Two years ago, we attended our first Family Conference in Orlando, Fla. through a very generous NFED scholarship. The conference was a life-changing event for our entire family. We had mom, dad, son, daughter, grandma and grandpa in attendance. …
Be a Genie for the NFED
All of us at some time or another have wished for a genie. Rub the magic lamp and get three wishes. How easy would that be! Sadly enough, this doesn’t happen. Why is that? Could it be because we no longer believe in magic? What if we could borrow the magic lamp for even just…
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…
Update: Don't Sweat It Golf Classic! 8/17/2011
Don’t Sweat It Golf Classic The Hamm family and their volunteer crew have done it again. Their Don’t Sweat It Golf Classic in Texas this past weekend raised an amazing $40,000 for the NFED! We send out a huge thank you to everyone who helped Paul, Susan and Zach make this a huge success. Please,…
2011 Don't Sweat It Golf Classic in Texas!
Please, check out another great fundraiser for the NFED: the Zach Hamm Don’t Sweat It Golf Classic in Spring, Texas! This Golf Tournament will be held on Sunday, August 14th. Click on the link for more info!
2011 Halloween Bash in New York City!
One of the biggest fundraisers of the year for the NFED is the Halloween Bash in New York City. Please, Click on the word Halloween Bash for Save the Date Info. More information will follow as soon as it is available!