The Making of a Hero
We all know it. For every child, growing up isn’t easy.
But for a child with ectodermal dysplasia, it’s got some extra challenges. When it’s all said and done, a child becomes Forever Strong! by being happy, confident, proud, and able to hang with their friends – at ballgames, the beach – without worrying about suddenly overheating and spiking a dangerous temperature.
It means eating their favorite foods. It means laughing and smiling with carefree abandon!
Together, we are determined to help kids with ectodermal dysplasia become Forever Strong!
What does Forever Strong! mean for the NFED?
It means always being there.
For you, for our families, for our staff, and especially, for every child living with ectodermal dysplasia. During these challenging days, we are all here, working harder than ever, to listen, to support and to help.
It means going virtual.
In addition to providing our core programs of education, support, advocacy and research, we have created the Forever Strong! fund to help ensure the health and ongoing future of the National Foundation for Ectodermal Dysplasias (NFED) – and to support new and virtual services to care for our families’ immediate mental, physical, and emotional health.
It means passing ELSA.
The Ensuring Lasting Smiles Act (ELSA) is at a critical point right now. We have until the end of the year to pass this bill. And when we do, that means insurance companies must view functioning teeth as necessary – not simply “cosmetic.”
Dental treatment necessary for kids with genetic anomalies will finally be viewed as a basic right! Register to join us for our Virtual Advocacy Day on the Hill.
It means asking for help from friends.
Resources have dramatically shifted. Because of the timing of the COVID crisis, we eliminated our spring appeal. Traditional family fundraisers like walks, crawfish boils, birthdays, and bicycle (and motorcycle) rides are a major source of program support.
But these have been postponed, canceled or taken online – meaning fewer program dollars. Donations have also dropped as families understandably focus on taking care of their loved ones. But others have started to step up – and for that we are grateful!
We aren’t going anywhere.
We are so grateful you are on the NFED team! Your loving support and generosity in considering a special gift at this important time will make a real and lasting difference. Please, join us today with your Forever Strong! donation.
Together, we are Forever Strong!
You help empower us to do great things for the ectodermal dysplasias community. We need each other more than ever. We are partners in hope – now and forever!
Double Your Gift
Thanks to an anonymous donor, gifts up to $20,000 total will be doubled! That means MORE smiles, cooling vests, summer camp with friends, research advances, and specialized dental care.Give Today