Jack Binstead has Osteogenesis Imperfecta (OI), or Brittle Bone
Disease. It is a genetic condition which is present from birth. 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.
Jack is one of the stars of BBC TV show, and upcoming movie, Bad
Education playing the character of Rem Dogg alongside Jack Whitehall and
Mathew Horne. Jack has also competed in athletics on an international
We are excited to welcome Jack on board as a Jeans for Genes ambassador.
Cherylee has Ehlers-Danlos Syndrome.
Ehlers-Danlos syndrome (EDS) is a group of genetic disorders that
affect collagen proteins in the body. Typical features are stretchy
skin, loose joints and fragile body tissues. Collagen is a building
block that strengthens and supports various body tissues. It is found in
tendons, ligaments, cartilage, skin, bone, blood vessels, the gut and
EDS is caused by alterations in certain genes, which make collagen weaker.
EDS affects at least one person in 5,000 in the UK.
It was only after Cherylee graduated at aged 23 that she was
diagnosed with the rare connective tissue disorder, Ehlers-Danlos
syndrome, Type III hypermobility type. Cherylee has used a wheelchair
Donna Ida is a self-confessed denim addict.
She opened her first Donna Ida boutique in 2006 and has a strong base
of fans who have embraced the idea of a specialist denim emporium.
Donna is an ambassador for Jeans for Genes and has raised over £70,000
to help us support and care for children with life-threatening and
life-limiting genetic disorders.
"Fashion speaks to such a wide audience that I thought it
important to use that platform to gain awareness for a great charity,
and Jeans for Genes are the perfect fit. I’m serious about charity work
and think that everyone should do their bit. If you have a voice for
any reason, you really should use it to help others with difficulties."
Visit Donna’s website www.donnaida.com
Kerry Danielle Ingram is a British child actress best known for her role as Shireen Baratheon in the HBO series Game of Thrones and Matilda Wormwood in Matilda the Musical
Born: May 26, 1999 (age 15), Slough
Movies: Les Misérables
Awards: Laurence Olivier Award for Best Actress in a Musical
Genetic Disorder: Kerry has Brittle Bone Disease
Jono Lancaster, 27 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.
Jono became involved in Jeans for Genes Day after meeting several
children with genetic disorders whilst making his three documentaries on
the BBC. Jono told us “these children made a huge impact on my life as I
know through my own experience the difficulties they are facing and
will face for the rest of their lives. I want to make a difference to
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
Nicholas has had one incident in the past while playing football, in
which he swallowed his tongue and was only saved thanks to his coach,
who had to knock two teeth out to clear his air way. After the accident,
Nicholas spent a month in hospital and did not take part in any
physical activity as he feared he could have another heart attack. But
after a year of living in fear of that happening again, he took control
and said 'It's weird to think my heart could stop and I could just die
tomorrow but that's why I live every day as much as I can and enjoy
myself.' Nicholas now takes a tablet every day to slow down his heart,
which he will have to take for the rest of his life.
We are delighted to welcome Nicholas on board as an ambassador for Jeans for Genes Day.
Adam Pearson, 29 from Croydon, has neurofibromatosis, a genetic
condition that affects one in every 2,300 people and which causes
non-cancerous tumours to grow on nerve tissue. In Adam’s case, the
majority of these tumours are on his face.
Adam presented Channel 4’s Beauty and the Beast – The Ugly Face of Prejudice in the UK and stars alongside Scarlett Johansson in Jonathan Glazer’s 2014 science fiction film, Under the Skin.
Adam has been campaigning to raise awareness of neurofibromatosis and
facial disfigurement for over a decade and always goes above and beyond
for us to help break down stereotypes and encourage a greater
acceptance of difference. We are delighted to have him on our board of
Tom Staniford is an para-cyclist from Exeter, Devon. Tom has MDP
Syndrome, an extremely rare genetic mutation which affects his
metabolism of fat. The condition affects just 8 people worldwide.
Tom was born a normal weight but lost all the fat around his face and
limbs during puberty. He has limited mobility, muscle tone and also
type 2 diabetes. His hearing also deteriorated when he was 10 and he has
worn hearing aids since.
Despite this, Tom won the British National Para-Cycling Circuit Race
title in 2011 and his ambition is to win Paralympic Gold at Rio 2016.
Training at high intensity to fulfil that ambition while coping with his
condition has not been easy "I have just 30-40% of the muscle fibres of
an average male and I struggle to metabolise sugar and carbohydrates
efficiently due to the diabetes, which also affects my recovery. My
muscles have a very narrow margin of efficiency and they're quite
inflexible because they tighten to protect my joints as I have no fat to
do this for me!”
Tom is such an inspirational man and we are delighted to welcome him on board as an ambassador for Jeans for Genes Day."
Billie Stevenson is a Textile artist and runs a small business called
Olive May, named after her beautiful daughter who was born prematurely
and sadly only lived for 24 hours.
The idea behind Billie’s business started because she hates that
society has become so ‘throwaway and replace’. As a result of this, her
whole house has been furnished from top to bottom with furniture that
has been given a new life, which otherwise would have most likely ended
up in landfill.
Billie loves 50’s, 60’s and 70’s fabric and loves using them to
reupholster old furniture, make cushions bags and canvas pictures.
Billie sells her work in a fantastic shop in Northampton called ‘A Most
Marvellous Place to shop’. In a recent vote by Harper’s Bazaar, the shop
featured in the UK’s Top 10 Vintage Emporiums.
Since 2008, Billie has created some amazing denim artwork in support of Jeans for Genes.
Louise, 19, from Aberdeenshire, has Fibrodysplasia Ossificans
Progressiva (FOP), a rare genetic disorder 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. In 2012,
Louise’s story was captured in a Channel 4 documentary ‘The Human
Louise’s health difficulties haven’t altered her unwavering ambition
to work in fashion. Louise as interned at Elle magazine, London Fashion
Week and has her own blog ‘The Baking Fashionista ‘. Louise tells us
‘FOP is never going to stop me from doing what I want to do’.
Louise is an inspirational young woman and we are delighted to welcome her as Patron of Jeans for Genes Day.
Victoria Wright has Cherubism. Cherubism is a rare genetic disorder that causes prominence in the lower portion in the face.
Victoria Wright is a writer, campaigner, public speaker and actress
with a facial disfigurement who mostly writes and campaigns about issues
to do with disability and facial disfigurement.
Victoria starred in the Channel 4 series Cast Offs and won the
Creative Diversity Network award for Best Onscreen Performance in 2010.
She appeared in the Channel 4 documentary Diverse Nation in 2011 celebrating the best diverse talent in TV.
Victoria has written for the Independent, the Guardian, the Times and Disability Now.
We are delighted to welcome Victoria on board as an ambassador of Jeans for Genes Day.
Duncan Beiny aka DJ Yoda is no ordinary scratch DJ. Q Magazine
declared him “one of the ten DJs to see before you die”, whilst Hip Hop
Connection voted him “one of the top three DJs in the world”.
As a producer Duncan has made music for film, TV and adverts and
released his debut artist album, ‘The Amazing Adventures of DJ Yoda’, to
critical acclaim in 2006. His latest album ‘Chop Suey’ released in 2012
further cements his credentials as a modern day musical polymath the
album saw him gather an all-star cast of vocalists including Boy George,
Greg Nice, Man Like Me, Action Bronson, Alice Russell, and the
Duncan and his wife Bianca Simms have a three year old daughter
called Lotta who has Rett Syndrome. Rett syndrome is a severe, life-long
neurological genetic disorder affecting 1 in 12,000 girls in the UK
today. When Lotta was born everything seemed normal and she was soon
crawling, toddling and doing jigsaw puzzles, but shortly after her first
birthday she started to lose the ability to move around.
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 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.
We are delighted to welcome DJ Yoda on board as an ambassador of Jeans for Genes Day.
You'll recognise Nick Ede from TV shows such as Project Catwalk and LK Today.
He's also the director of EdenCancan; a PR, events and celebrity management company based in London.
In one of his first roles as patron, Nick was part of the judging
panel who selected our winning t-shirt design from the students' entries
at London College of Fashion.
Nick is familiar with the world of genetics because of his father, Dr
Donald Ede, a geneticist in developmental biology who is now retired.
"I was keen to be involved with Jeans for Genes because of my
father’s input in the world of genetics and also because I find the
fusion of fashion and science really interesting," says Nick.
"Fundraising has always been something I have been very passionate
about and if I can do anything to improve the quality of life for
anyone, I will, in my own small way!"
In June 2009, Nick was awarded Scottish Communicator of the Year at the 2009 Scottish Fashion Awards at Stirling Castle.
Visit Nick's website http://www.nickede.co.uk/