Cleft Con 2022: Introducing the #CleftProud Generation

From the NFL to high schools across the country, today’s young people with clefts are proud and unstoppable

Just when we thought our annual Global Cleft Con couldn’t get any bigger, any more inspirational, couldn’t make us cry any harder, the cleft community showed up to blow us away once again. This time, it was the youth who took center stage. Together, they sent a message to the world loud and clear: We are proud of our cleft journeys and will no longer be ashamed of who we are. Nothing will stand between us and our goals.

Even NFL defensive linemen. Our keynote speaker, 24-year-old Washington Commanders tight end John Bates, opened the third-annual Global Cleft Con with an intimate look into his cleft journey. “My cleft was always part of my life,” he said. His parents worried classmates would bully him, and he remembers always being asked what happened to his nostrils, what happened to his lip. In high school, he met a young woman who understood: Kegan, who also had a scar on her face. They’ve been together ever since.

Of course, the other thing that has always been part of John’s life is football. Now a player on the world’s biggest stage, he is passionate about using his position to raise awareness about clefts and give back to the cleft community.

He closed his address with a charge to all in attendance: “Be yourself and know your worth…. If you can star in your own role and [be] who you are, I think that’s one of the best things you can do.”

That powerful message set the tone across all sessions that day on topics ranging from diversity within the cleft community to feeling “othered” by your cleft, and it formed an unmistakable undercurrent of grit and defiance that ran through the discussions in the open forums.

But perhaps nowhere was it more apparent than in the story of 60-year-old author Pat Simon and her co-author, nine-year-old Abigail Grady.

Abigail is the only person in her small town in Maine with a cleft. She didn’t like talking about it, and neither did her family; they never shared her baby pictures on social media. But it was in turning to social media for help that her mom, Anna, got to know Pat, an RN and children’s author from Chicago.

A cross-continental, cross-generational friendship was born. Abigail and Pat started to FaceTime as often as they could, each grateful to be the friend with a cleft the other never had. When Abigail had a surgery in 2021, Pat flew in to meet her in person for the first time. In one of their conversations, Abigail shared that she was nervous to take off her mask at school for lunch and snack time because she was afraid people would make fun of her. Pat thought that sounded like the perfect topic to explore in a book and asked if she wanted to write about it together with her.

When the first copy of their Simon Says Mask On, Mask Off was printed earlier this year, Pat flew to Maine to surprise Abigail with it. Abigail then surprised her whole town with it — they had no idea she had been cooking up a book. Their story was picked up by the local news and was even featured on Good Morning America!

Abigail is now Standish, Maine’s resident famous author. The journey has given her confidence a massive boost, and, like John Bates, she is now using the platform she has been given to advocate for other people with clefts who might be feeling a little shy.

“Embrace who you are; don’t be nervous and just be yourself,” she said.

As Abigail discovered, having a strong cleft community from an early age can make all the difference. A key goal of Cleft Con is to give that strong community to every young person with a cleft, no matter where they live. In the session “Young Adults Share Their Stories,” one speaker in high school, one in college, and a third who is a young professional each shared her story and what advice she’d give her younger self. Their wisdom—and the strength and grace on display at every Cleft Con session this year — gives us hope that the next generation of cleft-affected people knows they have the power to tackle every obstacle in their way, and to help others do the same.

I would “tell myself to be a little bit patient when I was younger, because it does get better, it does get a lot easier once you meet people like you, once you’ve seen that the world is so much more diverse than your little elementary school classroom.”
- Niamh Sosa, high school student, Alexandria, VA
“I didn’t realize how amazing my support network was and… how many people were there to help me day by day. I hope the three of us can be those people who… inspire others and help others feel confident about their cleft because we’ve had our struggles and we’ve somehow managed to be comfortable and confident enough to speak here today.”
- McKayla Kendall, student, Bates College, Lewiston, ME
“It’s all worth it. It will all be worth it. And while [the length of your treatment journey] seems like the end of the world right now, it’s really a small, small thing in a lifetime. It’s just a fraction of what we get to experience, and it actually makes life’s experiences greater.”
- Lisa Fast, food sales professional, Oahu, HI


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