This Man With A Rare Genetic Condition Started A Foundation To Inspire Kids Just Like Him

"I went away from that very first visit feeling that I need to do more with this..."

Jono Lancaster, co-founder of the Love Me, Love My Face Foundation, doesn't look like everybody else because he isn't like anybody else.

Born with Treacher Collins syndrome (TCS), a rare genetic condition affecting the development of bones and other tissues of the face, he's spent the past eight years traveling all over the world meeting families of children with TCS, spreading awareness of the condition, and leading free anti-bullying workshops in schools.



Courtesy of Jono Lancaster
Courtesy of Jono Lancaster

"I try to spend as much time as I possibly can [with each family] — a day, two days, sometimes I've even spent a week — it all depends on what we can do," Lancaster told A Plus. "I just want to come in and be around the family, doing what they normally do. And then that allows the children to just be themselves and have those moments if they do want to talk to me or do want to confide about something to me, then they can but they're not in a weird place, they're just at home..." 

This past week, he finished his most recent trip to the United States, where he met 250 families with TCS in Washington D.C. at a four-day convention/retreat before heading to Boston and Maine to spend time with even more families and hold public speaking events.  

After years of these international family visits, Lancaster has made an unforgettable difference in many children's lives.

Courtesy of Jono Lancaster
Courtesy of Jono Lancaster

Still, after spending time with some families "living without the medical things that they need and... struggling financially," he felt compelled to go even further with his travels. "I wanted to help and I wanted to do more, but I just knew that I couldn't do that by myself," he explained. With the encouragement of his three lifelong friends, Richard, Ben, and Penny, Lancaster began the legal documentation process of setting up the Love Me, Love My Face Foundation (LMLMFF). 

The organization's name was inspired by a BBC documentary (of the same name) about Lancaster and Treacher Collins syndrome. "I absolutely loved that documentary, and I'm proud of that documentary," he explained. "And when we were talking the names, I kept on coming back to this." After receiving permission from the BBC to use the name, everything else began to fall into place. 

"We really, really complement each other," he added. "Without them, I wouldn't have been able to do it on my own." While Lancaster's family visits remain solo trips to keep travel costs at a minimum so donations to the foundation can go toward medical supplies, his friends are involved in the other aspects. Penny, a tattoo artist, designed the foundation's logo based off on Lancaster's features. 

Though TCS is a rare condition, affecting one in 50,000 people, many have similar facial features, such as a a very small jaw and chin. 

Lancaster's silhouette doesn't just represent him, but all the people he's helped who, when they look at him — and look like him — finally feel less alone.

Courtesy of Jono Lancaster
Courtesy of Jono Lancaster

"I've met so many families that the child thought they were the only one that looked like this... and I think we all can relate to feeling lonely, and it's a horrible feeling," Lancaster said. "A lot of kids can feel that so being able to meet people going through similar things to them is huge." He's experienced this through not just meeting children with Treacher Collins syndrome but through interacting with school children after his anti-bullying workshops. 

Lancaster first began speaking at schools after one had seen him on television in the United Kingdom. [They] were amazed by my confidence and my outlook in life, and they just invited me to their school and asked me to talk to their kids," he explained. "When I got there, I was an absolute nervous wreck, but I spoke about my journey from hating the way I looked to accepting and loving the way I looked." 



Lancaster discussed topics that had personally affected him, like bullying, as well as others such as acceptance, depression, and suicide prevention that anyone could relate to. And many — far more than he ever expected — did.

Courtesy: Jono Lancaster. Jono Lancaster and students at LMLMFF's first official school visit.
Courtesy: Jono Lancaster. Jono Lancaster and students at LMLMFF's first official school visit.

"After I spoke I had all these kids come up to me and share their own stories... For some reason, they just all opened up to me," Lancaster said. "And I went away from that very first visit feeling that I need to do more with this, and so I put myself out there." 

Now, Lancaster visits as many schools as possible, from elementary to university level, always free of charge. Before establishing LMLMFF, he'd ask the schools to donate to various charities throughout the years. Now, he asks for a donation to the foundation because, though he knows every child has their own insecurities and is susceptible to bullying, he noted, "If you do have a genetic condition like Treacher Collins, then the potential of being bullied is higher. So when we started the foundation, it was huge for me that this continued..." 

The donations Lancaster receives for his workshops go toward LMLMF's current and future healthcare initiatives benefitting families of TCS.

Because this condition is also characterized by absent, small, or unusually formed ears, according to the U.S. National Library of Medicine, roughly half of people with TCS experience hearing loss. Therefore, many children need hearing aids and sign language lessons. 

Usually, Lancaster explained, the child and parents will receive funding for sign language lessons, but the extended family doesn't. "So we started funding sign language lessons for the whole family," he said. "Some of the families in South America, they may have a donated secondhand hearing aid, and we've got them hearing aid batteries." 

In the future, Lancaster wants to start providing actual hearing aids to families in need, as well as holding "get togethers" where families of TCS can all come together for education workshops and fun activities for the kids.

Courtesy of  Jono Lancaster
Courtesy of  Jono Lancaster

"I've got so many goals and so many dreams for the foundation going forward," he explained.

Though Lancaster has big plans for the organization, he's already excited by how far he and his friends have come from their "tiny, tiny village in England," Featherstone. "It's crazy how our little foundation has now just become worldwide," he said. 

Jacob Tremblay, the child actor best known for his performance in Room, will be playing a "a boy with facial differences" attending a mainstream elementary school for the first time in the upcoming fim, Wonder. Upon taking on that roll, Tremblay and his family have spent time learning from children and families living with facial differences. He also recently met Lancaster at the annual Children's Craniofacial Retreat and even helped spread LMLMFF's message of love and acceptance by wearing one of its T-shirts at a book reading. 

Courtesy of Jono Lancaster 
Courtesy of Jono Lancaster 

"...I just think it's amazing, and... it fills me with so much happiness that the foundation's spreading and word's getting out there, and we're getting a lot of love and support," he added. Always eager to spread the message even further, Lancaster welcomes every family who has a child living with TCS to reach out to him.

In the past few years, Lancaster visited families in Canada, Mexico, Australia, New Zealand, and the Ukraine. After spending a few months at home after this latest trip to Boston and Washington D.C., Lancaster will visit families in Oregon and Seattle in September. He'll also be making a pit stop at Portland Fashion Week to walk the catwalk there (nbd). Then, in November he'll head to South America and meet families in Chili, Argentina, and Panama. Though his schedule is pretty jam-packed already, one way or another, he'll always make room for more. 



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