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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Nicola Roberts black tee

 

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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.

Why Your School Should Take Part in Jeans for Genes Day!

Friday 23rd September marks the 21st Jeans for Genes Day and this year we hope Jeans for Genes Day will be bigger and better than ever before!

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Pupils from Chelsea Academy enjoying Jeans for Genes Day!

1 in 25 children are born with a genetic disorder with 30,000 babies and young children newly diagnosed each year. To put this figure into context, this is 10 times more than children who are diagnosed with cancer. Jeans for Genes Day raises money to support children and families who are living with a genetic disorder by providing funding for support such as specialist equipment, respite care and family support groups.

Jeans for Genes Day is a one day campaign where individuals, schools and workplaces are encouraged to wear their jeans in return for a donation of £1 or £2. The best thing about Jeans for Genes Day? It is extremely easy to organise! All your school needs to do is sign-up  online via our website for your free fundraising pack, communicate the date amongst your staff and pupils and rock your jeans on Friday 23rd September, it’s that simple!

Schools often organise extra fundraising events to run alongside their Jeans for Genes Day, such as blue cake sales or their own version of the Great British Bake Off! Why not allow a team of pupils to take the lead in organising your school’s Jeans for Genes Day? They can take ownership of fundraising activities that the whole school can get involved with. You will be amazed by how creative and enthused pupils will become when given the opportunity to take control of a campaign such as Jeans for Genes Day.  Teachers have commented that they have seen a dramatic increase in pupil’s confidence and motivation in the lead up to Jeans for Genes Day, on the day itself and in the weeks following Jeans for Genes Day.

Whether your school raises £250, £500 or £2,000 you can be assured that the sense of pride your pupils feel will be huge! Who would have thought that turning up to school for one day in their jeans would create such a feeling of community, enthusiasm and pride!

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Some very tempting cakes made for Jeans for Genes Day!

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Jeans for Genes Day is also a fantastic opportunity to encourage understanding and acceptance of genetic disorders and the impact it has on children’s lives.  Our free educational resources have been designed to help pupils understand genes, inheritance and genetic disorders.

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Our free educational resources are available online

Our top 5 reasons why your school should hold a Jeans for Genes Day:

  • You will have an incredible day whilst supporting an amazing charity
  • You will be part of a national campaign that sees millions of people donning their denim!
  • You will engage your staff, pupils and pupil’s families and highlight your commitment to changing the world for children with genetic disorders
  • You will educate your pupils on genes, inheritance and genetic disorders and create a deeper understanding and awareness of children who live with the day to day challenges of genetic conditions
  • It really is great fun!

Jeans for Genes Day SpongeBob school visits

 

Please show your support by signing-up for your free fundraising pack and take part in this year’s Jeans for Genes Day.

The Donna Ida Denim Drive!

Denim Queen and Jeans for Genes Ambassador Donna Ida Thornton is launching The Donna Ida Denim Drive this month in support of Jeans for Genes Day!

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Donna Ida aka Denim Queen! 

Need a new pair of jeans for Jeans for Genes Day? Donna Ida’s got it covered! This is your official invitation to take your unwanted jeans into one of the Donna Ida boutiques. In return for your donation, you will receive a £20 voucher to spend on the purchase of a brand new pair of Donna Ida jeans! The donated jeans will be recycled to raise vital funds for Jeans for Genes.

Ten of the best donated jeans will be given to fashion design students who will take on the challenge of ‘up-cycling’ them to create beautiful limited edition designs. These jeans will then be auctioned on Jeans for Genes Day on Friday 23rd September.

Donna Ida Thornton, Ambassador for Jeans for Genes said Spring is the perfect time to have a clear out, and Jeans for Genes is such a good cause. We’re inviting women to bring in old, worn-out or badly fitting jeans from any retailer and we’ll exchange them for a voucher towards a fresh new pair. We’re donating all your old jeans from the Donna Ida Denim Drive to Jeans for Genes and Newlife so they will be recycled to fund equipment for disabled children.’

Donna Ida opened her first boutique in 2006 and has built an incredible base of loyal fans and followers of her denim designs. Donna Ida is a Jeans for Genes Ambassador and has raised over £70,000 to help us transform the lives of children living with a genetic disorder in the UK.

You can take your jeans from today until the 31st May to one of the Donna Ida boutiques in Chelsea or Belgravia.

Don’t miss out on this amazing opportunity to treat yourself to a beautiful pair of Donna Ida jeans whilst supporting two incredible causes!

For more information, please visit: http://www.donnaida.com/

Give a girl the right pair of jeans and she can conquer the world!

 

 

Jogging for Genes!

This year Jeans for Genes Head of Marketing Operations Doron Kristal is taking part in his 18th marathon. Here he shares an insight into his training journey and the joys of balancing training with work and fatherhood.

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Doron Kristal Jogging for Genes!

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Doron Kristal proudly supporting Jeans for Genes

Is this your first Virgin London Marathon?

This will be my sixth London Marathon and marathon number 18 for me!

What inspired you to take on this year’s London Marathon?

I think I have an addiction to marathons! Since I started running marathons 8 years ago, I run the London Marathon as often as I can get a place. I also want to support Jeans for Genes which  is a charity very close to my heart. The charity helps to transform the lives of children who are affected by genetic disorders. I have been blessed with two healthy boys so being able to help other families is extremely important to me. 

When did you start your training and what advice would you give other runners on the countdown to the marathon?

I started my training on Christmas Day and I have been combining my 20 mile commute to work with my weekly long runs. For my final two weeks I will be ensuring I maintain good hydration levels and will take some time to reflect over my training runs. By looking at what has worked well and not so well, I can then incorporate these into my strategy for race day!

What has been the toughest part of your training journey?

Definitely motivating myself with the weekly long runs whilst feeling sleep deprived from having two boys aged 1 and 2 years!

What are your top 3 running tunes?

I don’t actually run with music, instead I use various other distraction techniques like calculating distance and time to keep on track of my pace. Other games such as names of countries and A-Z of boy’s and girl’s names work a treat! I also do ALL of my thinking while I run, it’s amazing how long my to-do list is by the end of a run!

What tips would you give somebody taking part in their first Virgin London Marathon?

Stick to your normal routine – the week before the marathon is the wrong time to be trying anything new, whether that’s new trainers or a new hydration strategy. If these haven’t been tried and tested during those arduous months of training don’t do it!

In previous years, nerves have kept me awake the night before race day. I would therefore suggest having a few early nights (always a challenge with two young babies!) during the final week which will make sure you are full of energy despite a broken sleep the night before.

Jeans for Genes have 13 runners in this year’s Virgin London Marathon and we would like to take this opportunity to say a huge GOOD LUCK and thank you to you all. Your dedication, commitment and support is incredible and we look forward to celebrating with you at the finish line!

If you would like to support Jeans for Genes but don’t fancy a marathon, you can still get involved! Why not organise a Jeans for Genes Day in your work place or school. Join us and thousands of others on Friday 23rd September and overdo it in denim and help transform the lives of children affected by genetic disorders. Sign-up for for your free fundraising kit at  jeansforgenesday.org/signup

 

To all the ‘rare’ Mums out there on Mother’s Day

You never imagined that motherhood was going to be this way.  You never knew that being a mother was somehow not going to feel like it was enough. No one told you how the diagnosis of your child was going to change you.  And you certainly never knew what your new normal was going to look like and how much joy and love and strength you would find in spite of – or perhaps because of – the fear and grief that accompanies a diagnosis of a rare and serious condition.

Welcome to the world of mothering a child with a rare disease.  Welcome to your new normal.

The medical bit…

My son, Nick has a rare genetic condition called Barth syndrome.  He is one of only 25 boys in the UK with this condition and there are less than 200 worldwide.  Boys and men with Barth syndrome have heart problems (often requiring a heart transplant) and/or a risk of sudden cardiac arrest.  Their immune systems don’t always function properly so they need injections to stimulate their bone marrow to make neutrophils to provide protection against life-threatening infections.  They can struggle with debilitating fatigue and muscle weakness.  Like many other rare diseases, we don’t yet have a treatment, or a cure.

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Michaela and her son Nick, photo courtesy of Amanda Clark.

If you’re a rare mum, then you know that there’s so much more to your child than his or her list of medical symptoms – their humour, their smile, their unique personality.  While you would give anything to take the disease away, equally you would do anything to protect that other bit that defines who they are.  There is so much more to Nick than this list of symptoms – there’s his quick and wicked sense of humour which always makes my day a bit brighter.  His stubbornness, his strength of will, his messiness and normal teenage forgetfulness can drive me crazy sometimes but they’re also part of what makes him Nick.

But, in some ways, the fact that he has a rare condition does define him, regardless of what we might want to say to the contrary.  How could it not?  It influences his every major decision; it even influences the minor ones sometimes, like whether he should use the energy he has to study, or to spend some much needed time with his friends.

I’ve felt privileged to meet quite a few ‘rare mums’ on this unplanned journey.  And today, on Mother’s Day, I want to thank you.  I know what you deal with on a daily basis, the constant fight to know enough, to be enough.  On top of all of that, so many of you have made the extra time to create or volunteer for patient support groups.  You choose to look outwards and fight to make life a bit better; sometimes knowing full well that all your hard work and sacrifice might not be enough to help your own child.

To all the mums just starting out on this journey, please reach out and ask for help from this incredible community of like-minded people.  Join your child’s represented patient support group and don’t be afraid to accept what they have to offer in the beginning when you’re struggling to get to terms with the diagnosis and you know nothing about this horrible rare disease that has suddenly struck.  Learn what you need to learn to manage the condition.  We all need to start by doing what we have to do for our child and family.

Once you start to feel a little more comfortable with managing your child’s condition, then it might be the ideal time to offer some of your time to help the mums who are following in your footsteps.  You’ll be amazed at the positive difference it will make to you and to your child and it will certainly help your rare disease community.

Then comes the time when you and your rare disease group will need to look around to see what other groups are doing.  That’s when signing up to larger umbrella groups like Genetic Disorders UK will accelerate your progress.  There is definitely strength in numbers and there are some incredible mums (and dads of course) who are forging new paths ahead and helping to lay down the groundwork for the rest of us.  Sign up to participate in registries, research and clinical trials. Sign up to fundraise or volunteer your time or services.

When you’re dealing with a rare genetic condition, you will always have a vital role to play in finding a treatment and a cure.  There are so few of us in any given rare disease and our patient support groups need us as much as we need them if we are to find a cure one day.  There are 6000 different rare genetic disorders out there and each one is different yet our commonalities greatly exceed our differences.  Together we are mighty.

Happy Mother’s Day to all the mums who are fighting to keep their ‘rare’ children alive, well and happy.  Happy Mother’s Day to all the mums who are grieving the loss of their precious rare child or children.  To all you Mighty Mums out there, ‘rare’ or not– for today at least I hope you put your feet up and enjoy your well-earned day of rest. And thank you to all your loving and supportive husbands, parents, children, family and friends who help you be who you are.

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Michaela and her other son Matthew.

Jeans for Genes and Genetic Disorders UK provide vital care and support services for children with genetic disorders in the UK like Nick. Read more about our work at jeansforgenesday.org