What is Treacher Collins syndrome? Treacher Collins syndrome (TCS),is a rare genetic condition affecting the development of bones and other tissues of the face. Because this condition is also characterized by absent, small, or unusually formed ears roughly half of people with TCS experience hearing loss. Therefore, many children need hearing aids and sign language lessons.
Who is Jono Lancaster? 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), Jono spends his time traveling all over the world meeting families of children with TCS, spreading awareness of the condition, and leading free anti-bullying workshops in schools. 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..."
What is the Emory Cleft Project?
The mission of the Emory Cleft Project is to learn about the causes and outcomes of orofacial clefting Orofacial clefts (OFCs), which include clefts of the lip and/or palate, are common birth defects that require a range of surgical and dental interventions. Although care has improved over the last several decades, the burden of these treatments can take a toll on families. We hope that our research will increase our knowledge of the causes of OFCs and will have long-term impacts on improved prevention, treatment, and prognosis for individuals and families affected by OFCs.
Is the Emory Cleft Project conducting any research studies? Yes! They are looking for study volunteers with a medical history of cleft lip and/or cleft palate, their parents, and any other affected family members, for a research study about genes that may contribute to clefting. Participation includes online surveys about family and medical history and DNA testing. Local participants will have photos taken. Volunteers will be compensated for their participation.
Who can be a part of this study? Individuals with cleft lip and/or cleft palate and their family members.
What are the benefits? This study is designed to learn more about the genetics of Orofacial Clefting and craniofacial differences. The study results may be used to help others in the future by improving diagnosis or treatment for such conditions.
What is Born a Hero? The goal is that BORN A HERO will confront the world with hope, courage, and love. BORN A HERO is here to fight for change. Our mission is to accelerate innovation and research to improve the quality of life for patients with FGFR Syndromes, including Pfeiffer Syndrome.
What is the Rare Disease Fair? The Rare Disease Fair is an event where rare disease advocates, rare disease organizations, researchers, doctors, pharma, biotech, academia, policy makers, and payers collaborate. Because all parties involved are important. Together we are stronger and can accelerate research and innovation.
The Rare Disease Fair is an opportunity to educate, discuss, learn, create awareness, network, and take actions. But we do this in a fun and Festival atmosphere.
The ultimate goal of the rare disease Fair is to educate researchers on different rare medical conditons with the hope that they will incorporate a rare disease into the research that they are already pursuing. This will serve as a bridge between the rare disease organizations and the researchers. Since one of the biggest issues for the rare disease community is to fund research and to find researchers.
Craniofacial Care at NYU Langone Health.