Every time I think about our time together in Minneapolis, my heart feels so happy and full of joy!
This year’s Family Conference was truly special. Our theme, Together: Taking Big Steps Forward, wasn’t just a phrase on a t-shirt. It was something we lived out every single day of the event. And I left feeling more hopeful than ever about where we’re going together.
View Photo GalleryA Family Reunion Like No Other
From the moment the first families arrived on Thursday, it felt like a reunion. So many smiling faces, tight hugs, and joyful shouts of, “You’re here!” Nearly 300 of us came together from five countries, including more than 100 first-time attendees. We also had families representing 14 ectodermal dysplasia syndromes, each bringing their unique experiences and strengths to the mix.
One of the biggest highlights is always Kays’ Kids Camp, thanks to the incredible support of the Louis J. and June E. Kay Foundation. With a superhero theme, the kids painted, laughed, played games, and embraced who they are – rare, resilient, and brave.
Siblings met others who live with the same differences as their brother or sister. And the kids had the chance to learn about ectodermal dysplasias in hands-on ways. Dr. Amanda Swanson even showed them how dentures are made using modeling clay. It helped demystify what some of them go through on a regular basis.
One of my favorite moments was watching the kids sing alongside Ally, an amazing young woman living with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome and studying to become a music therapist. She shared how music has helped her heal and hold onto hope. That room was filled with so much joy and love, especially when they sang “Let It Go” from “Frozen“. It’s a moment I’ll never forget.
Bonding During Social Time
Our teens bonded on a trip to the Mall of America, while young adults enjoyed a murder mystery party. They solved clues and dressed in character, reminding one another that facing challenges is easier when we use creativity, lean on each other, and don’t give up.
Outdoor games, including a little friendly floor curling (yes, even in the Minnesota summer!), brought lots of smiles, too. Every time I walked by, it felt a bit like a family picnic. I even grabbed a curling stone and slid it toward the house…did I say that right?!
And of course, the pool party was a huge splash, especially for those who struggle with overheating. I loved seeing adults and kids laughing and smiling, forgetting their struggles maybe just for a moment.
Learning, Sharing, and Supporting One Another
The learning sessions this year were some of the best we’ve ever had. Families packed rooms to hear from experts, advocates, and affected individuals. The vulnerability shared during panel discussions was incredibly moving. Parents, teens, spouses, young and old(er) adults who are affected by ectodermal dysplasias spoke with honesty and heart.
Erin, a Family Conference Planning Committee member and mom to a child affected by ADULT syndrome, put it beautifully.
“It sometimes can feel lonely because you’re the expert when you go into the doctors…It’s through the NFED Family Conferences that you then can reach out to others and see that yes, this is rare, but we’re all in it together and you’re not doing it alone.”
I am forever grateful to the brilliant and compassionate members of our wide medical community who participate, too. Dr. Beau Meyer and Dr. Clark Stanford gave updates on the latest options and developments for dental treatments, including dentures and implants. Other sessions addressed skin care, eye concerns, emotional well-being, genetics, and more. We are deeply grateful to our medical partners for their wisdom and compassion.
One-on-one Dental Evaluations and Ask-the-Expert sessions were again a highlight on the final day. Our caring doctors, dentists, and more took time to listen, answer questions, and offer guidance. Many even helped families find providers in their hometowns. I’ll never forget what Dr. Meyer said when someone asked why he does this work. He simply replied, “Remember why you’re doing what you’re doing. Remember the answer you gave to that dental school interview question when you said you wanted to be a dentist, ‘I want to help people.’”
For families who were newly diagnosed and attending for the first time, it was a lot to take in. But time and again, I saw them embraced by others who said, “You’re not alone. We’ve been there, and it’s going to be OK.” That’s the heart of this community!
Advocacy in Action
For the NFED, advocacy is more than legislative action. Advocacy is about speaking up in every space where our families, especially children, live, learn, play, and grow. At this year’s conference we hosted a special school advocacy workshop led by the PACER Center. They helped parents learn how to make sure their child’s learning environment works for them.
But, we also remain committed to legislative change. I am so proud that we had the opportunity this year to share our story with the world, or at least the people who watch the local news in Minneapolis. KSTP Action News showed up on day one and interviewed several members of our community, like Hannah. Alongside Board President Karl Nelsen and Board Member Charley Richter, she was featured on the 6 p.m. news segment that highlighted the Ensuring Lasting Smiles Act (ELSA), reminding everyone why dental care should be covered by insurance. It’s not cosmetic. It’s essential.
I love what Hannah shared. I have watched this story over and over again. Our community was thrilled to get such attention, especially as we seek to get ELSA passed into law in the 119th Congress.
I invite you to share this story with everyone and anyone, especially your federal legislators. You can also remind them what Caleb, a young adult affected by x-linked hypohidrotic ectodermal dysplasia (XLHED), shared at the conference, “To bite into an apple isn’t a privilege. It’s a human right that everybody should be able to experience. It’s not something that should be gate kept from these kids that are growing up with [ectodermal dysplasia].”
So very true, Caleb.
Research That Brings Hope
Before the conference officially began, we partnered with the University of Minnesota’s Department of Dermatology for a powerful Grand Rounds session that brought patient stories directly to medical professionals and students. Read more about Grand Rounds.
I love how the NFED is always supporting and advancing research across the many different syndromes that fall under the ectodermal dysplasias umbrella. These conditions can be incredibly complex and, for some, physically painful. The challenges they bring often leave individuals and families feeling desperate for answers. They long for treatments that don’t just manage symptoms, but truly change their lives.
One of the most talked-about moments at this year’s conference was the update on the Edelife Clinical Trial, which is exploring a prenatal therapy that could help boys born with XLHED develop functioning sweat glands. It’s a groundbreaking step forward that gives all of us reason to hope.
We were lucky to capture a beautiful photo of two baby boys enrolled in the study with their moms, standing alongside Dr. Kathy Grange and Dr. Pedro Sanchez. Seeing those smiles was a powerful reminder of why this work matters so much. One of the mothers, Elizabeth, shared the following.
“To be able to help progress the science like I have been able to through participating in the study is even better. I love that part. When I put Jack in his crib at night, I always tell him how he’s a very special boy.”
Yes, he is. Yes, they all are. And thanks to dedicated researchers, generous families, and supporters like you, we are truly taking big steps forward, together.
A Bittersweet Celebration
This was my final Family Conference as the NFED Executive Director. What I didn’t expect was the incredible tribute from our staff, board, and community. A video chronicled my NFED journey and a parade of kids gave me the biggest group hug I’ve ever received. They are the reason I do what I do.
I will be with the NFED through the end of 2025, and while it will be hard to say goodbye, I know our future is bright. I will also not be completely leaving this community. As I always say, once you connect with the NFED, you’re forever family.
Looking Ahead
We shared exciting news on the final day. Our 45th Anniversary and Family Conference will be in St. Louis in 2026, the very region where the NFED first began. I hope you will mark your calendars now and plan to be there to make it the best Conference yet!
I thank you from the bottom of my heart to every family who attended, every expert who shared their wisdom, every volunteer and staff member who gave it their all, and every sponsor who helped make this event possible, especially our top tier supporters:
Summit Sponsors
- The Louis J. and June E. Kay Foundation
- The Nelsen Family Charitable Fund
- The Vora Family
Trailblazer Sponsors
You made this gathering not only possible, but unforgettable. I especially thank our 2025 NFED Family Conference Planning Committee: Chairs, Karl and Nancy Nelsen; Caleb Anderson, Jeff and Katie Anderson, Jordan and Joanna Dahl, Doreen and Tom Farrell, Molly Goiser, Erin Nawrocki, Soren Roe, and, staff members, Kelley Atchison and Kristin Matus-Kelso. They worked tirelessly for months to create this magical experience.
The NFED community is my heart. I left Minnesota with a heart fuller than ever. Thank you ❤️
We will keep moving forward. We will keep growing stronger. And we will always do it together.
With love,
Mary