Miles for Smiles: Move with Purpose. Make an Impact.
This June, lace up, dive in, or saddle up for a cause that changes lives. The NFED Miles for Smiles Challenge is a month-long movement: walk, run, swim, bike, skate, ski, or treadmill your way toward a future where every family affected by ectodermal dysplasias has the support they need. Pledge your miles, rally your sponsors, and let’s move together.
How It Works
- Set Your Goal: Choose how many miles you want to pledge for the month. Every level of commitment counts.
- Build Your Page: Create a personal fundraising page, share your story, and invite friends, family, and colleagues to sponsor your effort.
- Log Your Miles: Track however you like: outdoors, indoors, or on your favorite machine. All movement is welcome. No fancy tracking devices required.
Why It Matters
Ectodermal dysplasias are a group of rare conditions affecting 14.5 per 100,000 births each year in the US alone. Families navigating these diagnoses rely on NFED for research, resources, and community. Every mile you log and every dollar your supporters contribute helps make that support possible.
A Story That Moves Us
Beth Orchard has been part of the NFED family since the days of mailed newsletters.
When her son was diagnosed with XLHED, she already knew the NFED’s power firsthand- she’d seen what access to research, community, and resources could mean for a family navigating a rare condition. Over the years, she’s fundraised, donated, received support to attend family conference, and traveled to Washington D.C. to advocate. Miles for Smiles is her way of giving back.
The event was born from a simple belief: everyone should have an opportunity to celebrate movement. Beth grew up alongside friends with a wide range of abilities, and as she learned more about ectodermal dysplasias, she saw how families show up every day, pushing wheelchairs, adapting, persisting, and still finding ways to celebrate what they can do. She wanted to create something that honored that spirit. Walk 1 mile or log 100 miles. Swim, skate, ski, or stroll. It all counts.
More than the miles, Beth hopes the campaign opens doors for connection. The NFED community, she’ll tell you, is defined not by a diagnosis but by the size of its collective heart. Sharing your story, even when it feels vulnerable, tells someone else they aren’t alone. And in a community built on rare conditions that many people have never heard of, that reminder can change everything.
“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.”
— Beth Orchard, Miles for Smiles Campaign Lead
Ready to Move?
Join the challenge today. Create your fundraising page, set your goal, and start logging, or donate directly. Every step, stroke, and pedal brings us closer to a world where no family faces ectodermal dysplasias alone.
Join Our Challenge