It’s YOU!

The Making of a Hero

We all know it. For every child, growing up isn’t easy.

Boy standing on the beach with the ocean behind him. He's wearing a jacket and smiling.
We want every boy and girl to feel they can smile with confidence like this handsome young man!

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.

Having teeth means being able to enjoy apples!

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.

Mary Fete stands arm and arm with a mom and her daughter, who is affected by ectodermal dysplasia at an NFED Family Conference.
Our NFED staff is here to support you – even if we can’t be together right now at events.

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.

You got this, dads – and moms – and our NFED team has your back.

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.

The Nelsen family have been advocating for ELSA for years and are excited about a future when it could be law!

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!

A tween boy with AEC syndrome kneels on the backs of an adult woman and adult man also with AEC syndrome.  They all have matching teal shirts and are smiling.
Sometimes, you just need someone to boost you up!

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

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