It’s been a while—six years, in fact—since we last saw Keegan and his mom, Lindsey, at the National Foundation for Ectodermal Dysplasias (NFED) Family Conference. If you’ve been around for a while, you might remember them.
Keegan was just three years old when they came to their first conference in St. Louis in 2011, and they quickly became regulars, attending six conferences over the years. You may have crossed paths with them at one of those events, or maybe you remember reading about Keegan’s Denture Adventure on our blog. Both Keegan and Lindsey are affected by x-linked hypohidrotic ectodermal dysplasia (XLHED) and live in Iowa.
The last time we saw them was back in 2019, when Keegan was 11. Check out this video from that Conference of him and his buddy, Austin.
Now 17, Keegan’s coming back to the Family Conference this summer in Minneapolis, and we can’t wait to see how much he’s grown.
When we saw their names pop up on the registration list, we had to reach out. After six years away, we were curious—what brought them back? Here’s what they shared with us.
What does the Family Conference mean to you?
Lindsey: The Family Conference is a special opportunity to connect with other families who truly understand the daily challenges of ectodermal dysplasias. It’s a place of support, learning, and acceptance. There’s so much positivity in the NFED network—it truly feels like family. We always leave feeling uplifted and empowered.
Why does Keegan want to come to the Family Conference this year?
Keegan: It’s been a few years since we’ve been able to attend due to schedule conflicts, and we’ve really missed it! I’ve missed my friends and the NFED staff. The Conference gives me a few days each summer where I don’t feel so different—I feel like I belong. It’s a powerful reminder that I’m not alone.
What’s your favorite part of the Family Conference?
Keegan: Kids Camp has always been the highlight for me—so many fun activities and the best memories. And of course, the swimming pool! This year, I’m especially looking forward to Teen Camp. It’s exciting to be growing up and meeting others who are going through the same things. I also like seeing the little kids who remind me so much of me and my friends when we were younger.
How did attending a Conference in the past impact Keegan?
Keegan: It was truly eye-opening. The first time I went, it helped me understand that I’m not the only one living with HED. Meeting other teens and young adults showed me that I can grow up, be successful, and live an awesome life. Every conference has created lasting memories and friendships I’ve kept outside of the event. Now that I’m older, I’m starting to see myself as a role model—I want to show the younger kids that HED doesn’t have to define you in a negative way. Just like the older guys inspired me, I hope I can be that for someone else.
You’ve been to several conferences. What do you hope to gain from attending this year?
Keegan: I’m most excited to reconnect with old friends and see the amazing NFED staff again. But I’m also looking forward to making new memories and meeting new people. Every conference brings new experiences—and that feeling of connection and community is something I carry with me long after we’ve gone home.
You have just a few weeks left to register for the Family Conference. Be sure to register by May 31, before the rates increase.
REGISTER NOWHave you attended a Family Conference before? Tell us in the comments below what you liked about it!