By John Dickie, IV
The National Foundation for Ectodermal Dysplasias (NFED) family recently lost a patriarch.
Joseph Barone passed away peacefully on February 23, 2018, shortly after a fall. He had reached the age of 97 years, which is quite an accomplishment in itself. But for someone like Joe, it was even more impressive.
You see, like many of us associated with the NFED, Joe was affected by ectodermal dysplasia. Hypohidrotic to be exact. What’s more, he was born long before much was known about this syndrome, or the support network that we currently count on.
As a child, Joe thought his family members were the only ones affected with the classic symptoms that we all know. The missing teeth, sparse hair, and inability to sweat. Two of his brothers were affected as well, yet they all made due.
Joe and his sister, Anna, were always up for a good walk. During the evening strolls we would take around the hotel grounds at NFED Family Conferences, he would tell me stories of how he stayed cool in an era without air conditioning, and how he and his brothers coped with heat as they worked hard in their family restaurant business.
At a time when I was growing into adulthood and dealing with the challenges of ectodermal dysplasia, he was there to show me that he had been in my shoes before me, and with his gentle smile, was now there to help guide me. That sort of guidance is invaluable.
As hard as it is to believe, at the age of 52, I have become one of the elders in our community. It’s upon my generation to be there for the younger families just now reaching out to the NFED.
I can tell new parents with certainty that their children can do anything that they want in life. Like anyone else, their goals and accomplishments can be reached with confidence and perseverance.
I’d like to thank Joseph Barone for that.
(Editor’s Note: Read Joe Barone’s obituary. You may also enjoy reading another article about Joe Barone that we ran in 2013, 94 Years and going Strong.)
– John Dickie, IV, is a guest blogger for the NFED. He is a graphic designer in Florida. He and his family have been NFED members since 1982.
Wow, Joe paved a great path!!
Glad to read this 😊
Thanks
I remember Joe when I came to the NFED Conference 12 years ago… my son had just been diagnosed… just seeing him at his age enjoying life was one of the best reassurances I could have had. It gave me confidence to enjoy seeing my son with HED grow and not to worry.
We love to hear that. Joe would have loved to have known that he helped you in some way.
It is a certain blessing to remember Joe, an extraordinary man who seem to go out of his way to bless his community.
YES……. I remember Joe, and even the moment that the picture was taken during the NFED meeting in Cleveland 1999 and showed above. I am the guy on the background with the Galapagos T-shirt. It was a previledge to meet Joe and all the other fantastic and inspiring people there. PLease keep up the good work. Greetings from warm Ecuador, but I survive….. BEN HAASE