You don’t need to host a gala to make a difference for families living with ectodermal dysplasias. Some of our best support comes from everyday people doing what they love and inviting others to join them. NFED fundraisers comes in all sizes!
Take the Pearson family in Iowa, who organized a dodgeball tournament and turned a gym full of neighbors into NFED supporters. Or Henry, who as a young boy in Virginia set up a lemonade stand with his mom, Catherine, that became a neighborhood tradition. Henry has grown up since then, but the impact of that simple idea hasn’t.
Sometimes we just get waves of people coming. Some just stop by to donate or to have a conversation. The best part is we get to meet a lot of new people and we have fun doing it. – Henry
The Walker-Reed family held a fishing trip raffle and brought their community together around something they already loved. And in Pennsylvania, Jayden, whose journey with ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC syndrome), turned Halloween into giving with his annual Halloween Hustle.
Small NFED Fundraisers Can Grow
Some fundraisers grow into something bigger than anyone expected. Every few years, Dave Reidenour fires up the grill for Nikko for NFED, a backyard barbecue that has become a beloved tradition. The event draws the New York motorcycle community and neighbors, all coming out for his grandson, Nikko, and the ectodermal dysplasias community.
We’re not raising money for us. We’re raising money for the organization that represents what he has and helps everybody. – Dave
Choose Something You Enjoy
No one knows that better than Beth, a yoga teacher who has given proceeds from her Restorative Yoga class to the NFED for more than a decade. When her daughter, Maddie, was diagnosed with ectodermal dysplasia, Beth knew she wanted to give back. She had already been running donation-based classes for years, and now she had her cause.
We found the NFED, and I knew right away that I wanted to contribute. It felt like a simple way to give back, especially since they have given us so much support over the years. – Beth
Her first classes were pop-up sessions in local parks. That same spirit took her to the 2024 NFED Stand Together Advocacy Conference, where she led a yoga session after a long day of advocacy on Capitol Hill.
“It was an honor to help people unwind and refresh after that long day,” Beth said.
Her advice for anyone thinking about starting their own fundraiser? Start with what you love.
Do something you enjoy, because then the work won’t seem so hard. Make it doable, so you can see it through. And remember, every little bit helps.
Ready to Host an NFED Fundraiser?
A dodgeball court, a lemonade stand, a fishing raffle, a barbecue, or a yoga class. There are lots of ways to fundraise. The format doesn’t matter. Every fundraiser raises money and starts a conversation. That’s how understanding grows. That’s how community forms. To the families who make it happen, doing what they love for the people they love, thank you. You are the NFED.
Have an idea for an NFED fundraiser? Reach out to Isabella to start brainstorming.