Our ambassadors

YouTuber and presenter Nikki Lilly has a genetic condition called AVM, or arteriovenous malformation, a rare condition that's characterized by an abnormal connection between arteries and veins

Coleen has supported Jeans for Genes Day for 15 years. Coleen’s sister Rosie had Rett syndrome and sadly died in 2013, aged just 14. Rett syndrome is a rare genetic neurological and developmental condition that affects the way the brain develops, causing a progressive inability to use muscles for eye and body movements and speech. It occurs almost exclusively in girls

Tom Staniford is a para-cyclist from Exeter, Devon. Tom has MDP Syndrome, an extremely rare gene change which affects his metabolism of fat. The condition affects just 8 people worldwide

Jono Lancaster was born with Treacher Collins Syndrome, a rare genetic condition, which is believed to affect around 1 in 10,000 babies, meaning he was born with no cheekbones and hearing difficulties.

X Factor finalist Nicholas McDonald was born with a rare genetic condition called Long QT syndrome, which is believed to affect 1 in 2,000 people. Long QT syndrome is a serious heart condition which can cause fainting and episodes of an abnormally rapid heart rhythm, called arrhythmia.

Writer, campaigner, public speaker and actress Victoria Wright has Cherubism. Cherubism is a rare genetic condition that causes prominence in the lower portion in the face. Beginning in early childhood, both the lower jaw and the upper jaw become enlarged as bone is replaced with painless, cyst-like growths

Fashionista Louise Wedderburn has Fibrodysplasia Ossificans Progressiva (FOP), a rare genetic condition that causes the soft connective tissue of the body, such as the muscles, to gradually turn to bone. There are only 45 confirmed cases of FOP in the UK

Actress Kerry Danielle Ingram has the genetic condition osteogenesis imperfecta, also known as Brittle Bone Disease. Kerry regularly fractures her bones and requires periodic infusions to increase her bone mass

Actor Jack Binstead has osteogenesis omperfecta (OI), or Brittle Bone Disease. OI is caused by a problem with collagen levels, a protein that forms the framework for bone structure. In OI, the collagen may be of poor quality or there may not be enough to support the mineral structure of the bones. This makes bones fragile and liable to fracture at any time without trauma. Jack has been a wheelchair user since the age of three and has suffered over 60 broken bones.

Producer Duncan Beiny aka DJ Yoda, has a young daughter with Rett Syndrome. Rett syndrome is a severe, life-long neurological genetic condition affecting 1 in 12,000 girls in the UK today.
Girls affected with Rett Syndrome are believed to understand everything but they are not in control of their speech or their movements. Affected children lose the ability to move and communicate and end up requiring 24 hour care and are often fed through a tube. Complications can include seizures, digestive and cardiac problems, curvature of the spine and sudden death