When Beth speaks about the National Foundation for Ectodermal Dysplasias (NFED), she doesn’t sound like someone describing just a patient advocacy organization. She sounds like someone speaking about home. Because that’s what the NFED is to her.
Beth has been part of the NFED community since the days of mailed newsletters-if you know, you know! Over the years, she’s fundraised, donated, received help to attend conferences, and traveled to Washington, D.C. to advocate on Capitol Hill. When her son was diagnosed with X-linked hypohidrotic ectodermal dysplasia (XLHED), she already understood what the NFED could mean for a family affected by ectodermal dysplasia.
Now, she’s channeling all of that history into something new- a fundraiser she hopes will welcome everyone, everywhere, no matter what movement looks like for them.
Launching NFED Miles for Smiles
When I first met Beth at the 2025 Family Conference, I was immediately caught up with her enthusiasm to host a new event. For Beth, this idea had been percolating for a while, and over dinner we bounced ideas back and forth about what it could look like. Now, just under a year later, Beth has made that idea into reality.
Miles for Smiles is driven by a lifetime of watching people show up for themselves and each other, in any way they can. Growing up, Beth had friends with a wide range of abilities and needs. As she learned more about ectodermal dysplasias, she saw the same thing reflected in the NFED community: families adapting, persisting, pushing wheelchairs, packing fans and cooling towels, cheering from the sidelines, and still finding ways to celebrate what they could do.
“I wanted to create a space that would welcome everyone, of all abilities, to contribute positively and also give back to the NFED,” Beth said.
So she did. The NFED Miles for Smiles Challenge runs the entire month of June. You can walk, run, swim, bike, skate, ski, or treadmill your way towards a future where every family affected by ectodermal dysplasia has the support they need. No minimum distance. No required equipment, and all movement in June counts.
Learn More and Join the Challenge
This NFED Fundraiser is About More Than Miles
For Beth, the fundraising matters, but it’s not the whole point.
The NFED has been her community through some of the most significant moments of her life as a parent. She knows firsthand what it means to receive support and she felt the pull to give back just as much. But she also knows that this community’s greatest strength isn’t its programs or resources, it’s the people.
“This community is driven by family and by connecting to a mission above being ‘bigger and better,'” she said. “It is truly about loving one another, sharing it out in the world, and telling others about our condition as much as it is to learn about it for ourselves.”
She wants people to understand that when they support Miles for Smiles, they’re standing behind a community of people who face rare, often misunderstood conditions every day, and who do it with remarkable grace and heart.
“I want people to know we have big hearts and love to put that out into the world,” Beth said.
Miles for Smiles Is About Helping Others
When life gets busy, and it always does, Beth comes back to the same motivation: helping others.
“My story isn’t just for me,” she said. “It’s about walking alongside others.”
She hopes Miles for Smiles creates space for exactly that kind of connection. Sharing a fundraising page means sharing a story. And sharing a story, Beth believes, is one of the most courageous things anyone in this community can do.
“It is hard to put our stories out there. When we do, we let others in and tell them we are here, and we are amazing.”
She also knows from experience that those moments of vulnerability are often when the most meaningful connections happen. A fundraiser like this, she hopes, is a chance to feel less alone in the journey and maybe make some new friends along the way.
On the Fence? Here’s What Beth Wants You to Know
If you’re wondering whether you have the time, fitness level, or bandwidth to participate, Beth’s answer is simple. You do.
“Even if you are only able to walk a few steps, you are still out there making a difference,” she said.
There are no wrong ways to get involved. Whether you log one mile or one hundred across the month of June, whether you swim, skate, stroll, or simply share your story on a fundraising page, it all counts. Beth designed the event from the beginning to honor every form of movement, because that’s what this community actually looks like.
Whether you do one mile or 100 miles, walk, bike, run, stroll, it doesn’t matter. Movement helps your mental health, but also helps you find purpose and meaning. We welcome everyone no matter your ability to join us in celebrating what unites us.
Join Us this June!
Miles for Smiles runs virtually June 1–30. Create a personal fundraising page, set your goal, log your miles however you like, and invite your people to sponsor your effort. Or, if you’d rather simply show your support, you can donate directly.
Every step, stroke, and pedal brings the NFED community closer to a world where no family faces ectodermal dysplasias alone.