Made in Chelsea star Louise Thompson tells us why she supports Jeans for Genes Day!

During a photo shoot with the gorgeous Made in Chelsea star Louise Thompson, we managed to sit down and find out why Louise will be donning her denim this Friday!

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Why do you support Jeans for Genes Day 2016? 

I have been supporting Jeans for Genes Day for about 4 years and I love being  part of the campaign. I create jeans so the partnership works really well. It is an amazing and inspiring charity.

What talent did you inherit from your parents?

My athleticism and fast metabolism!

Do you ever double denim?

Yes, I love denim and was wearing double denim for filming!

Would you ever quadruple denim?

I haven’t ever quadrupled denim but for this shoot let’s go way overboard and overdo it in denim! I do actually own a denim bikini which is a strong look, bring on summer!

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How many pairs of jeans do you own?

Too many to know the number, at a guess between 60 and 70!

What is the most you have ever spent on a pair of jeans?

I would never spend a lot on a pair of jeans! 

If you could design a pair of jeans who would you most want to see wearing them?

Kate Moss – who else!

Who is your ultimate denim poster boy or girl?

Lucky Blue.

What is your message to all the schools and organisations that take part in Jeans for Genes Day? 

Get involved! Be creative and take advantage of a non-uniform day! OVERDO IT in denim!

What will you doing on Friday 23rd September?

Wearing my jeans and supporting Jeans for Genes Day!

If you were stranded on a desert island which three items would you take with you?

Denim hat, rope and a box of matches – how sensible?!

Join Louise Thompson THIS Friday and overdo it in denim! Sign up today and support children living with a genetic disorder in the UK> jeansforgenes.org 

Jeans for Genes chat to Girls Aloud superstar Nicola Roberts!

This year Girls Aloud singing sensation and fashion designer Nicola Roberts is supporting the Jeans for Genes campaign and donning her denim to help transform the lives of children living with genetic disorders.

We asked Nicola what inspired her to support Jeans for Genes Day and what she will be doing on Friday 23rd September!

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Why do you support Jeans for Genes Day 2016?

Wherever you can lend help to an important cause or charity you should. It is so important to help a charity raise their profile.

What talent did you inherit from your parents?

My red hair from my Dad!

We are really excited to announce that this year’s Jeans for Genes theme is ‘Overdo it in Denim’ so with this in mind:

Do you ever double denim?

All the time! I have double denim’ed for years. It creates an incredible look but it is important to have the confidence to pull it off.

Would you ever quadruple denim?

It depends what the look it for. If you were just running to the shop it may look a bit much but for a shoot, I think it looks fab!

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How would you describe your signature denim look?

High waisted light wash jeans with a denim jacket.

How many pairs of jeans do you own?

I can’t answer that truthfully, it’s too embarrassing!

What is the most you have ever spent on a pair of jeans?

When I was younger, I was dragged into buying expensive designer jeans, now I find Topshop, ASOS and Levi’s so good! You just need to work out what works for your body and your style, then you will find you don’t need to spend ridiculous amounts!

If you could design a pair of jeans who would you most want to see wearing them?

Bella Hadid, Kristen Stewart & Jessica Lawrence

Who is your ultimate denim poster boy or girl?

Rihanna!

What do you think is the worst jean / denim offence?

Jeans that don’t fit! You should always go for high waisted jeans.

What is your message to all the schools and organisations that take part of Jeans for Genes Day? 

Everyone should know the difference Jeans for Genes makes and why they should support the charity.

What will you doing on Friday 23rd September?

Overdoing it in denim! 

What quote do you try to live your life by?

Life is really precious and being healthy is so important so you must look after yourself.

Join Nicola Roberts and don your denim on Friday 23rd September, sign-up for your free fundraising pack today jeansforgenes.org 

The Ultimate Guide to Overdoing it in Denim on Friday 23rd September!

There isn’t long now until this year’s Jeans for Genes Day and with your help we can make this year bigger and better than ever before! As well as wearing your jeans and donating your cash, why not raise even more by really overdoing it in denim this Jeans for Genes Day!

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The cash you raise on Jeans for Genes Day really does change lives for children living with genetic disorders across the UK. Charlie, 5 is a loving, smiley, happy boy who loves football, cars and trains. Charlie has Rubinstein Taybi Syndrome (RTS). RTS affects just 1 in 100,000-125,000 and is characterised by short stature, moderate to severe learning disability and other features including heart and kidney defects, obesity and eye abnormalities.

This year, Jeans for Genes are delighted to be providing a grant to Rubinstein-Taybi Syndrome Support Group UK to help fund a crèche and activities for affected children during their annual family conference giving parents time to focus on talks.

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Charlie

The more you do, the more we can do to help children like Charlie so why not go the extra mile and check out our fundraising ideas and overdo it in denim this Jeans for Genes Day!

Denim bakes – bake up a batch of blue cupcakes or biscuits, stir up some blue lemonade and sell your blue treats

Double, triple, quadruple denim – add a denim shirt, jacket, tie, hat, bag, hairband and shoes. The more denim the better!

Gene and Tonic drinks trolley – when the clock hits 5pm celebrate Jeans for Genes Day by selling Gene and Tonics and blue cocktails!

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Hold a denim fashion show – encourage everyone to jazz up their jeans and strut their denim stuff, with prizes for the best effort

Denim manicures – set up a nail bar and your desk and charge a fee for painting your colleagues nails and toes denim blue

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Denim swap shop – to satisfy the fashionistas and savvy shoppers, hold a jean swap shop charging a small fee to take party – you could come away with some free fashionable finds!

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Three legged denim race – pairs of participants wear one pair of jeans between them. One gets the left leg, one get the right. The first couple off the finishing line wins!

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Can’t wear jeans? Or wear jeans all the time? – You can still get involved! Find out how

For more denim-tastic ideas, please visit our website and remember it’s not too late to sign-up for your free fundraising kit, with loads more fabulous fundraising ideas inside. Sign up now at jeansforgenes.org

 

 

Meet Josh, 7 who is helping to raise awareness of Jeans for Genes Day 2016!

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Josh and his Mum Wendy

Josh has Norrie disease, a genetic condition which causes boys to be born totally blind or become blind in both eyes at a young age.  Up to half of children who are born with this condition will also have developmental delays and behavioural problems.

Josh’s parents, Wendy and Simon, were not aware that Josh would be born with any problems and were initially discharged from hospital with no concerns. Within just two weeks, Wendy and Simon suspected something was wrong and took Josh to A&E. Doctors found that Josh had been born with bilateral retina detachment which is a common symptom of Norrie disease, it was at this point Josh was diagnosed with the genetic disorder Norrie disease.

The condition primarily affects the eye and in almost all cases leads to blindness in male infants. It also causes other problems including progressive hearing loss and developmental delays in motor skills and learning disabilities.

Despite his condition, Josh has already conquered Braille and is performing above average in school. Mum Wendy explains: “He manages amazingly. He has an incredible spirit and a great sense of humour which I’m really thankful for.

His communication is good. He uses Braille – he’s actually at Level 2 which is the highest level. He also has a cane to help him get from A to B but he doesn’t always use it appropriately. We haven’t bonded well with the cane let’s just say that.”

Another symptom of Norrie disease is progressive hearing loss which Josh began to experience when he turned six. Wendy and Simon have been speaking to Josh about what may happen in the future. Despite this, Josh loves nothing more than rocking out at home listening to the top 40 and is a huge fan of American singer Mike Posner! He has also recently discovered radio stations Absolute Rock and Radio X!

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Wendy, Josh and Josh’s older sister Chloe

Wendy is helping to set up the Norrie disease Foundation, who this year are a Jeans for Genes grant charity. Norrie disease Foundation will receive a grant from funds raised on this year’s Jeans for Genes Day and will be used to set up the first UK support group for children and families affected by Norrie Disease.

Wendy says it is good to have other families who have children with Norrie disease to talk to and has been overwhelmed by the support she’s received.

“I’ve been working on the Norrie disease Foundation 24/7 recently. They have one in the States already but we’re setting up the UK one. Through the charity Genetic Disorders UK, I was lucky to attend the Genetic Disorders Leadership Symposium. I went with my NDF hat on and met a host of wonderful charities who were so welcoming and supportive.”

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If you would like to support more children like Josh, please overdo it in denim on Friday 23rd September and help raise vital funds for children living with genetic disorders in the UK> jeansforgenes.org

Jeans for Genes Day 2016 Ltd Ed Fashion T-shirt Launch in Glasgow!

Last week was a very exciting week for Jeans for Genes Day, we launched our 2016 limited edition fashion t-shirt at the Gap Store on Buchanan Street in Glasgow. This year’s t-shirt has been designed by 2nd year textile design student Katherine Garbutt who attends the prestigious Glasgow School of Art.

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We were joined by an array of fashion and lifestyle bloggers including the very cool Forever Yours Betty and Honey Pop, journalists from across Glasgow and X-Factor’s Nicholas McDonald. Guests were also treated to a live performance from Scottish singing sensation Tallia Storm, a loyal supporter and ambassador of Jeans for Genes Day!

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A special mention must be made to corporate partner Moet Chandon who kindly donated Moet for all of the guests to enjoy and Cheeky Wee Cupcakes who provided delicious cupcakes for the evening. They were absolutely divine!

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This year’s fashion t-shirt has been modelled by several high profile celebrities including the iconic Kate Moss, Nicola Roberts, Frankie Bridge and Charlotte De Carle and is available in sizes 6-22. Get yours before they are gone and support in style jeansforgenes.org/shop

To see all of the photos from the night, please visit our Facebook page!

Introducing Katherine Garbutt, this year’s Jeans for Genes Day fashion t-shirt design winner!

This year, Jeans for Genes are delighted to have teamed up with the prestigious Glasgow School of Art to design our 2016 limited edition fashion t-shirt!

Students from GSA were challenged to design a t-shirt which represents the Jeans for Genes brand and appeal to our fashion conscious supporters. After weeks of hard work, designs were submitted and our panel of fashion experts had the difficult decision of choosing a winner. This year, the winning entry came from Katherine Garbutt, a second year Textile Design student. The panel loved how the hand-drawn design is not only straight to the point and very easy to wear but was also inspired by Katherine’s own inheritance in the form of her handwriting which holds hints of her parents and grandparents script. The t-shirt is a gorgeous piece that can be dressed down with denim shorts and sandals or dressed up with jeans and heels!

Jeans for Genes chatted to winning designer Katherine to find out her inspiration behind the design and what it means to her to take the crown this year!

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Katherine and her winning t-shirt design

What made you choose to go into design and illustration?

I have always enjoyed drawing in any form and I chose to study Textile Design to learn more about print and pattern design.

Had you heard of Jeans for Genes Day before the competition?

I knew about the work Jeans for Genes do in raising money for a wide range of genetic disorders that affect a huge amount of people. Whilst working on the design I learned a lot more about what the charity do and how Jeans for Genes Day has such a wide-reaching impact on peoples’ lives.

How did you feel about entering the t-shirt design competition?

I was anxious to enter the competition as I didn’t think that I would win! It was fun to do something outside of my university work and to work on a live brief. I enjoyed working with the charity and hearing their feedback on works-in-progress.

What was the inspiration behind your design?

The design is about how our handwriting is connected to our family, I can see some of the way I write in my parents, siblings and even grandparents writing. I love simplicity in design and wanted to make it both personal and universal.

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Katherine’s design was inspired by her inheritance in the form of her handwriting

How did you develop the design?

Once I had the idea, it was a case of a lot of experimentation with scale, placement and colours…and lots of writing! 

Was this your first piece of clothing design? What did you learn?

This was this first t-shirt that I designed. I learned a lot about working to a live brief, research what was currently on the market and using that to guide the design process.

What are the benefits of winning the competition for you?

It is a huge confidence boost which is a great motivator as a design student. It has made me value my own style a little bit more and have confidence to produce more work.

Who would you most like to see wearing the t-shirt?

Livia Firth, I admire that she has used her fame to promote green and ethical fashion.

Who are your favourite fashion designers?

Yii, Tsumori Chisato, Delpozo, Dusen Dusen, Rodebjer.

What is your favourite brand of jeans? What is your favourite cut?

Howies and skinny blue jeans.

How has the competition helped your university course?

The competition has helped me apply the skills that I have learned at university to a live brief and to consider the many processes a design must go through before it is produced.

 What are you plans for the future?

I would like to specialise in printed textiles here at GSA, I am also planning on taking part in an exchange programme in Tokyo for the first term of my third year.  After university I would love to work as a print designer.

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This year, the Jeans for Genes Day t-shirt has been modelled by several high profile celebrities including the beautiful Kate Moss, Nicola Roberts, Frankie Bridge, Louise Thompson and Tallia Storm and are available in sizes 6-22. Get yours before they’re gone at jeansforgenes.org/shop!

Father’s Day: Becoming A Rare Dad!

In 2008 I became a father.  But only after little Oliver stubbornly refused to arrive on-time.  He was plucked out via emergency caesarean section after a long labour.  He was born for all intense purposes perfectly normal, well apart from his little “turned in” big toes.

His mum and I were now parents, proud parents.  We were the first out of all of our respective siblings to provide a grandchild for the grandparents to dote upon.  Oliver was special and everyone was completely in love with this tiny new baby.

My “Rare Dad Day”.  Oliver however was not just the first grandchild, he was not just our first child, he was also 1 in 2,000,000 to be born with Fibrodysplasia Ossificans Progressiva (FOP).  The first few months proved tricky, as they are for all new parents.  Oliver had various different health concerns but they were all pretty minor with hindsight.  We knew he had ‘funny toes’ but none of the many medical health professionals we met with ever gave us cause for concern.  Even the foot specialist never had a clue, she tried to straighten them!  We had no idea of their significance, until the day we met with a neurosurgeon.  Those “turned in” big toes were the clue, the key, to the devastating diagnosis a year after his birth.  That day I became a “rare dad”.  That day was in 2009.

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Oliver and his father Chris

So what is FOP? (Stone-man or human-mannequin disease as the media like to call it)  As well as being one of the rarest diseases, FOP is also one of the most debilitating.   FOP causes muscle to turn to bone, imprisoning a child in a second skeleton.  Progression is variable and any injury could trigger an explosive episode.  Life expectancy is limited to 40 but complete immobility is to be expected by age 30, with restrictions starting early in childhood, taking a child’s independence just as most children gain it.

Oliver though, for whatever reason, is relatively untouched and not a day goes by when I am not we aren’t thankful for this.  He is now 8 and has most of the mobility he was born with.  He is bucking the trend.  He has some restrictions but he can still reach the sky, can walk up-right, can jump, can run, can swim, and can more or less do what his peers can with only some limitations due to the risk of injury.  The feeling of relief, joy and pride, when we watch Oliver participate in a sport such as archery, he should no longer be able to do, is incalculable.  Even small, insignificant behaviours such as running through a field, arms flailing, brings a smile to our faces.  We don’t know how many more of those days we have left.  FOP could take his movement tomorrow.

We are lucky!  How can you have a child with a devastating, life-limiting condition such as FOP yet consider yourself to be lucky?  Oliver’s chances of FOP were 1 in 2,000,000 – you don’t get much unluckier than that in the medical world.  But odd as it may seem, we are lucky in the rare disease world.  We feel lucky.  We have a diagnosis while many parents of both FOP and other equally rare conditions, are still living with the unknown; figuring out he had FOP did not cause fallout but for many FOP children it does; Oliver’s diagnosis took just over a year when the average is 7 or more; we also have many research teams across the globe, all racing to find a treatment and a cure for FOP.  We also have our community, our FOP friends.  Without them, we would be lost.

What would you do?  No-one can say how they would feel if something happened to their child, we certainly had no idea.  After the initial shock began to wear off, I began to think: what could I do? I couldn’t just sit there and accept this was to be my little boy’s lot in life.  I needed to at least try and change his future.  But how?  From that point on, my life and my family’s life became committed to helping the research teams find that treatment.  Our family was now part of a bigger team.   I became a Rare Dad.

Now seven years on and we (“we” as I’m in this with Oliver’s “Rare Mum”) have achieved more than we could have imagined.  We can hold our heads high and say we are fighting this.   This was never part of our grand plan as we walked down the aisle together, dreaming of our future with our children.  But as parents, we aren’t really anything special: which parent wouldn’t do anything for their child?  We never thought we would have our own charity, but we do.  We are proud of what we have achieved and will continue to do everything in our power to support those searching for a treatment for our baby.

The new normal.  But what about being a rare-dad?  Well today I have three sons, Oliver 8, Leo 6, and Harry.  Neither of Oliver’s brothers carry the FOP gene.  We pretty much aim for as “normal” a family life as we can manage.

That is of course the rare-normal – more hospitals and doctors’ appointments than average; more explanations to strangers; regularly knowing more than most doctors – but mixed into this is our family and we spend even more time creating good memories to look back on when times are darker.

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Oliver and his two brothers

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Of course with three boys there is a lot of arguing, shouting and competition, but in between there is also a lot of fun. We try not to say no to Oliver when he wants to join in, we just have to find a way to say yes.  This is terrifying when any injury could trigger an FOP flare-up and cause progression of his disease.  But we take a deep breath and let him go.  Oliver rides a two-wheeled bike, a scooter, he visits adventure playgrounds, climbs trees, goes to parties, has nerf battles in the garden, enjoys water slides and rapids, flies on zipwires, and even does rough-and-tumble with his brothers.  It scares us but we let him do it… he has to have his memories too.

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A few weeks ago I had a “normal” weekend.  It was Oliver’s first camping overnight trip with the Beavers, and for me it was time to meet other dads who didn’t know about Oliver or his condition.  It was refreshing and fun, doing something every other dad was doing.  It was normal: some quality time with my little boy, just living the moments, Oliver enjoying so many firsts, and I even managed a cheeky beer or two in the sun!

Time for yourself.  Everyone needs some time-out, a time where they are themselves without the pressures of the rest of life.  Is this truer for rare-parents? I don’t know, think probably being a parent is just a tough job, period.  Being able to turn-off regularly, to have an escape with friends, refreshes you.  I didn’t realise this until being encouraged to join the Round Table, a social group and charitable organisation that meets twice monthly to do something fun!  Beer, meals, abseiling, gorge-walking, archery, go-karting, arcades, sports, all sorts.

Regardless of the activity, you get to step away briefly from being a dad, or a rare-dad.  Round Table also has a catch phrase, “Ordinary people doing extraordinary things”, I really can’t think of a better description for all the rare-dads (and mums) out there.

So to all the rare-dads, enjoy this Father’s Day and remember to take time to enjoy your rare-family but also to take some time for yourself.

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To support Oliver and children like him please sign-up for your free fundraising pack and hold a Jeans for Genes Day on Friday 23 September.