Our NFED family gathered at the base of the beautiful Rocky Mountains in Broomfield, Colorado, July 14-16. It was a weekend filled with educational workshops, research updates, and dental evaluations along with hugs, laughter and some tears. Our theme was “Reaching New Heights Together” – and we did just that with Karl Nelsen as our trail guide (aka master of ceremonies)!

A man in an orange hoodie with the hood up is wearing sunglasses. He's holding multiple ropes like a mountain climber would have.
Karl Nelsen led us on our Colorado adventure!

This year, we had a smaller but more intimate conference. It was a beautiful event where families got to know each other. I had the opportunity to connect with the 73 families who did attend. This Conference felt more personal because I got to know families better. I have so many happy memories like seeing Shine, who is affected by a condition which causes him to wear leg prosthetics. This energetic little guy aspires to compete in the Ironman some day! It was a small family reunion for the families from Colorado who have more than 16 people in their extended family who are affected by ectodermal dysplasia and three of them came to Conference.

This is an infographic which explains the demographic makeup of the attendees at the Family Conference:

213 total conference attendees
73 in-person families
95 individuals affected by ectodermal dysplasias
8 virtual families
24 families attending for the first time
29 states represented
3 countries represented

I remember having beautiful Lily’s laughter fill our hearts as she ran through the halls. We also had the largest number of individuals affected by incontinentia pigmenti (IP) — 10 —  attend and connect. I could go on and on! I am grateful for every person who attended and shared this wonderful experience with us. There was an energy unlike any other, and I am still on a high from it. Family Conference is like an adrenaline shot for the NFED staff — we come home tired but inspired and energized.

What Attendees Had to Say

This year was a nice mix with about half of our families being first-time attendees and the other half returning for their 2nd, 10th or 33rd time! It was wonderful to see a couple of families who had been Conference regulars when their sons were younger but had not attended for a while. Both families returned with their sons, Jacob and Alex, who are now adults! Jacob told us that “he’s back!” and we couldn’t be happier. Now, he’s one of the older guys who the little guys look up to.

A man with a camo hat and black glasses is seated next to his mother in a conference room.
It was good to see returning families, like Alex and Janet.

Tiffany of Idaho explained why she brought her children back to another Conference.

“I wanted my son, who is affected, to feel this again. To be connected. It’s so powerful.”

– Tiffany
Six men of varying ages stand shoulder to shoulder, all wearing the same gray NFED Family Conference t-shirt.
“The Big Guys” – John, Everett, Sean, Max, Victor and Alex

John of Florida who attended his first Conference in 1985 shared why he attended this year.

“I have known some of the people at Conference longer than most of my friends at home. I go back to the early Conferences when there were the old guys before me – Joe Barone, Chuck Root – who I looked up to. I keep coming back because we’re the old guys now. We can impart our wisdom and collective knowledge. I bring my daughter, who is a carrier, here so she will know her options.”

Take a peek at many of the wonderful people who showed up and some of the fun we had at this year’s Family Conference!

Taking Care of Our Emotional Health

Conference programming always addresses the many physical challenges that the ectodermal dysplasias present and how to best treat them. But, just as important is talking about the emotional aspects of being affected or having a loved one affected.

We were thrilled to have Dr. Patricia Marik, a pediatric psychologist from the Medical College of Wisconsin, join our Scientific Advisory Council this year. (You will read more about her in an upcoming Volunteer Spotlight.) She led age-appropriate sessions for adults, teens and tweens about emotional wellness, how to cope, and how to be assertive and speak up for yourself. Dr. Marik is going to help us develop these kinds of resources for you to access on our website in the future.

Happy Kids

Children sit in a circle at Kids  Camp getting ready to play a game.
The kiddos enjoyed games and crafts in Kays’ Kids Camp.

I got to hang out more in Kays’ Kids Camp and Teens Program this year. That first day can be hard for some of the children when they are dropped off since it’s a new situation and they may not know others. But, it didn’t take them long to make friends and have a good time. It filled my heart to see the kids so happy. Whether it was the teens making a vision board or the tweens role-playing with Dr. Marik to learn assertiveness or seeing the smiles of the little ones who had a dolphin or a huge spider painted on their face — this year’s group had fun together.

A girl with face painting of flowers on her forehead gets licked on the cheek by a black lab who is a canine support dog. In the second photo, a girl with teal shirt shows her arm which has a painting of a pink dragon on it.
Laurel gets a doggie kiss and Amelia shows off her arm art.

I heard one child say how sad they were because they didn’t want to leave Kids Camp! We may not know for years the impact we had in providing these kids with a place where they can feel comfortable with who they are and see and connect with kids like them. But, I can say for certain, they sure were happy those three days.

Heartfelt Thanks

It takes an enormous amount of people power to make Family Conference the magical event that it is. For more than a year, Kelley Atchison from our staff led the team in planning and made sure things ran smoothly. The rest of the staff all played their roles and contributed to its success.

Two women and three men stand shoulder to shoulder outside on a pool deck.
Dr. Clayton Butcher (second from left) and Dr. Tim Fete (second from right visit with Rhonda (center) and Bruce (far right).

But, an event of this magnitude wouldn’t happen without volunteer help! I applaud and thank the extraordinary members of our Scientific Advisory Council who donated their time and expertise to give presentations and share their knowledge one-on-one with families. We are grateful to Clayton Butcher, M.D.; Timothy J. Fete, M.D., MPH; Dorothy Kathy Grange, M.D.; Maranke I. Koster, Ph.D.; Pilar Magoulas, M.S., CGC; Patricia Marik, Psy.D., M.A.; Elaine C. Siegfried, M.D.; and Clark Stanford, DDS, Ph.D., MHA. They are the best — not only smart but caring and committed to the NFED family!

Attendees had the opportunity to meet one-on-one with a dentist to discuss their dental situation. We are grateful to Derek Conklin, DDS, P.C., and Lonnie Johnson, DDS, Ph.D. for joining Dr. Stanford to consult with families.

Volunteers prep raffle tickets, sort photo props and sell promotional items at the conference.
Families volunteered to make the Conference an enjoyable event for everyone.

Our Awesome Families

Thank you, Sarah Hamilton, for chairing our Family Conference Planning Committee, comprised of Lucy Davies, Lexi Dutch and Marc Steingesser. This team arranged for the kids to enjoy the service canines, the photo booth, and Cinderella and Spider Hero. They planned the pool party and games as well as the movie complete with popcorn and cotton candy!

We also had many awesome volunteers who helped set up and tear down the registration tables, sell our NFED swag, assist with the chance auction, facilitate or speak at the sessions, monitor the teen room and more. Whatever need we had, there was someone who stepped forward to take action.

Family Conference requires significant financial resources beyond the registration fees. I am incredibly grateful to the Louis J. and June E. Kay Foundation, The Louis & Gladyce Foster Family Foundation, Institut Straumann AG, Straumann USA LLC, Pierre Fabre and Crane Dental for their sponsorship.

Are Your Wondering About Next Year?

From the mountains in the West, we are heading to the monuments in the East for next year’s event.

We will be in Washington D.C. in 2024 from Sunday, July 7 through Tuesday, July 9.

The programming will look a little different than our traditional conferences and will include advocating together for the Ensuring Lasting Smiles Act on Capitol Hill. We’ll share more information later this year.

Family Conference continues to be one of the best things the NFED does. It literally brings together our ectodermal dysplasias community — affected individuals, their families, doctors, dentists, researchers and even a gentleman from a dental lab who wanted to learn more. It was true in 1982 at the first Conference in Belleville, Illinois, and it proved true this year in Broomfield, Colorado: bringing ectodermal dysplasias families together is powerful. There simply isn’t anything else like it! Our wish is for you to explore how you can attend a future Conference. Give yourself and your family that gift. You’ll never forget it.

When it comes to the Family Conference, Kelle, a mom in Arizona, said it best:

There is no option for not coming back!

– Kelle

What Did You Think?

If you were with us in Colorado, I’d love for you to share your favorite thing about this year’s Family Conference in the comments below.

One comment on “We Reached New Heights Together at Family Conference”

  1. 1
    Rhonda PAge on August 18, 2023

    The family conference was fantastic. It was so great to see old friends and make new friends. The hotel was great. Thanks for all your hard work to put this years conference together. It was a huge success!!!

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