2018 CCA Retreat Experience:

For the second year, FFC sponsored two individuals to attend the Children’s Craniofacial Association (CCA)’s Family Retreat in Salt Lake City.  We asked Nate and Joyelle to write about their experience at the Retreat.


This past June, I attended my first CCA Retreat. Families near and far attend the retreat. And even a few members of the cast from the movie Wonder were there too! Some participants were newcomers like me, and some were long-time attendees.  At the retreat, everyone is like a big extended family. There were definitely more hugs than handshakes. Even one of the organizers, who I had not previously met, recognized me from a photo and introduced herself on the first morning. Unlike the outside world where I stand out, there were no gawks or mean comments. Regardless of whether it was your first time or your 10th time, everyone felt included.  In addition, at other conferences I’ve been to, I can usually skip wearing a name tag after the first day because everyone knows my name since I look different. Not at this retreat!

At the CCA retreat, all types of craniofacial differences, including Apert Syndrome, Pfeiffer Syndrome, Crouzon Syndrome and Treacher Collins were represented. Although most participants were younger children and their families, a good portion of adults with craniofacial differences also attended. There was a lot less explaining to do about my differences because people could authentically say they knew what I was talking about or experiencing. Genuine smiles, love and compassion prevailed.

Even though there seemed to be a lot of unstructured time in the schedule, I did not feel like I was bored. During the downtime, I found myself engaged in conversations with peers, sharing my experience with younger families, and getting outside of the hotel to explore Salt Lake City. The four days of the retreat seemed to go by in a flash, and I am definitely looking forward to attending the 2019 retreat in Scottsdale, AZ.


Most people look at me strangely because I look different.  But, to be honest, I am not that different. At the Retreat in Salt Lake City this summer, I learned two important things:  1) Never judge a person by their facial appearance; and 2) Even if someone looks different they might be able to astound you with their amazing talents.

The atmosphere of the retreat was wondrous. There were activities happening all day long and into the evenings. People enjoyed talking with each other, and I liked sharing stories about space camp and my work at Midcoast Humane.

At the talent show, one person’s performance struck me the most. Her name was Kate.  She was hearing impaired and could not be understood when she talked. She signed to the song “This Is Me” from the Greatest Showman. She did it so well that the whole room gave her a standing ovation. There was something that was so emotionally powerful about her passion, heart, and soul, as she signed the words to the song.

At the retreat I made many friends. I splashed with the girls in the pool, and had my first dance with a boy at the Saturday night celebratory gala. I also hung out with wrestler champ Ben Kjar, who cheered me on during my last surgery. During the educational symposium, he spoke about being a victor, not a victim. I love telling my friends at home about meeting a special sassy girl; the Elle McKinnon who played Charlotte in the movie Wonder!

The retreat allowed me to meet some very special individuals and to reflect on my own life. When you see someone who has a difference, you might think, “I can’t talk to her,” or, “I don’t want to talk to her.” But maybe that person has something to say that you’ve been trying to figure out. Maybe that person has the knowledge you are looking for.  You might realize, “Oh, this person has so much to say!”

The retreat broadened my perspective of what impacts I can make in the world. Be kind. Open the door. Write a thank you. Ask how you can help. Sometimes being different is cool. Being kind over being right and being you is what matters most in the world.  I am thankful to the Foundation for sending me to this retreat!