Guest Blog: A Father’s Day Message from Martin Winter

Olivia Winter was born on the 10th August 2010 and like most fathers, I remember trying to stem the tears of joy at her arrival. My wife (Sarah) and I had been waiting for this momentous occasion for a very long time.

Fathers day blog 1

At six weeks of age, primarily due to faltering weight and a pale complexion, Olivia was diagnosed with Diamond Blackfan Anaemia (DBA).

DBA is a failure of the bone marrow to produce red blood cells required to send oxygen around the body. Olivia had her first blood transfusion at six weeks of age and as she approaches the grand old age of 5, she has now had in excess of 60 transfusions following a failed steroid trial at 18 months.

With Father’s Day fast approaching, what better time to reflect on what being a father means, particularly to a child with a genetic disorder. I have found the experience challenging, motivating and felt totally helpless at times, however, I have realised we are the fortunate ones; there are many who suffer considerably more and for that, I am truly thankful.

father's day blog 2

As a father, I often hope her condition will miraculously disappear but I remain a realist. To help me come to terms with her condition, I often asked myself the following:

  1. Can we cure Olivia?
  2. Can I take her place to avoid the endless needles and monitoring?
  3. What can I do to make a difference to her condition and the DBA community?
  4. How can we make Olivia’s childhood as ‘normal’ as possible?
  5. How can we promote blood drives/donations?

For the past 2 years, I have been a committee member for DBA UK, a charity providing support, hope and research to those affected by Diamond Blackfan Anaemia in the UK. The charity continues to provide significant support and advice to my family and as a fundraising co-ordinator and trustee, I have an opportunity to share my experiences and raise funds for vital research into finding a cure. We continue to live in hope!fathers day blog 4

Olivia continues to amaze me with her courageousness, determination and personality and as parents we are truly proud of her. If there were 2 things I could change about her, it would be to a) Cure her of DBA and; b) Stop her singing Let it Go from Frozen every 5 minutes!

Let’s raise a toast to all the fathers on this special day, especially those caring for a child with a genetic disorder.

It’s a celebration honouring fatherhood, paternal bonds and the influence of fathers in society. Keep up the good work!fathers day blog 3

What Is A Dad?

A dad is someone who

wants to catch you before you fall

but instead picks you up,

brushes you off,

and lets you try again.

A dad is someone who

wants to keep you from making mistakes

but instead lets you find your own way,

even though his heart breaks in silence

when you get hurt.

A dad is someone who

holds you when you cry,

scolds you when you break the rules,

shines with pride when you succeed,

and has faith in you even when you fail…

Sign up to Jeans for Genes Day on Friday 18th September 2015 to help us continue providing vital care and support services to children like Olivia. jeansforgenesday.org/signup

Meet Elle, our t-shirt design competition winner

Once again Jeans for Genes have partnered with the Edinburgh College of Art for our annual t-shirt design competition. The students were tasked with designing a fashion illustration which clearly represents Jeans for Genes, whilst having mass appeal to our fashionable supporters. All the designs were then submitted to our panel of fashion experts before a winning entry was picked. The designer of that winning entry was 20-year-old Elle McKee. 

image

Elle McKee

What made you choose to go into design and illustration?

 I just love drawing. I’ve been scribbling since I was a child and today it’s my relaxation as much as my work. 

Had you heard of Jeans for Genes before the competition?

Yes, we celebrated jeans for genes day every year at school. We were allowed to wear denim anyway so we did fancy dress and we really committed to our costume creating!

Elle McKee's school J4G Day

 Elle’s school taking part in a fancy-dress Jeans for Genes Day

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

I was very inspired entering the competition. The brief was really open meaning I had a lot of freedom to experiment and come up with something that was also in keeping with my own style of work.

What was the inspiration behind your design?

I got thinking about how we show off our jeans and I came up with the coat hanger idea. I was impressed by the confidence the charity has, it encourages people to have pride in their genes and their jeans and that was something I was really inspired by.

Jeans for Genes limited edition fashion t-shirt

Elle’s winning design

What are the benefits of winning the competition for you?

Winning any competition is a great way of getting your work seen but it’s even more gratifying when it is helping such an important cause. Plus I get to see celebrities wearing my design, which will be really surreal.

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

I know Keith Lemon is a supporter of the charity and I think he would look ‘bang tidy’ in a t-shirt. If not, maybe he could persuade his mate Fearne Cotton to wear one. I love her style.

Elle McKee in Fashion tee (white background)

Elle modelling her winning design

Any final thoughts?

I am absolutely thrilled to be picked and I’m really excited to be part of raising money and awareness for Jeans for Genes, it’s such a wonderful charity. I am very honoured!

The Jeans for Genes limited edition fashion t-shirt is  set to be modelled by a bank of high  profile celebrities including Lucy Watson, Tallia Storm, Coleen Rooney, Louise Thompson and the one and only Kate Moss!

Get yours before they’re gone at www.jeansforgenes.org/shop

Extraordinary Gene Team raise over £30K in the London Marathon!

On Sunday, 12 amazing fundraisers ran the London Marathon for Jeans for Genes and Genetic Disorders UK, raising a truly epic £30,000 and counting!

Marissa Bird, Ben Young, Hayley Woods, Paul Lyons, Jo May, Henry Hill, Andy Judd, Daniel Kitchen, Timothy and Graham Fletcher, Rachel Degg and Melissa Venables have all been training for months in preparation for the big day and on Sunday all 12 completed the race to smash their fundraising target and raise funds to provide vital support and care for children with genetic disorders across the UK.

Marissa Cheer Point Marissa ShadwellMarissa Bird ran for her son who has Chromosome 1q21.1 Duplication Syndrome and completed the marathon despite breaking her ankle just 10 months before. https://www.justgiving.com/Marissa-Bird/

Ben Cheer Point Ben Medal 3Ben Young ran in support of his friend’s son Louis who has a chromosome 18 abnormality. http://uk.virginmoneygiving.com/team/BenandLiz

Hayley & DaughterHayley Woods ran for her sister who has Sjorgens Syndrome, and Hayley herself has Cyclical Neutropenia which causes recurrent low neutrophils (the white blood cells which fight bacterial infections). http://uk.virginmoneygiving.com/HayleyWoodsGeneTeam

Paul Medal 2Paul Lyons ran for his 7 year old daughter who has Deletion of the Short Arm of Chromosome 5. http://uk.virginmoneygiving.com/PaulLyons15

Jo Medal 3Jo May completed the marathon for her mother who is suffering from Huntington’s Disease. http://uk.virginmoneygiving.com/JoMay1

Andy & SuzieHenry MedalAndy Judd and his best friend Henry Hill completed the marathon for Andy’s daughter Ava who has MDP Syndrome. Andy’s wife Suzie completed the Great North Run 2014 for Genetic Disorders UK raising over £9,000. http://uk.virginmoneygiving.com/HenryHill1 http://uk.virginmoneygiving.com/AndyJuddLondonMarathon

Daniel & SonDaniel Kitchen ran for his son Finn who has Joubert Syndrome which affects just 1 in every 200,000 people. http://uk.virginmoneygiving.com/DanielKitchen

Graham & Timothy Medals Graham Massage 4Timothy Fletcher ran with his dad Graham and friend Rachel Degg for his niece and nephew who are both affected by a genetic disorder. https://mydonate.bt.com/fundraisers/timgrahamrachel

Melissa MedalMelissa Venables completed the gruelling Marathon des Sables only 2 weeks ago and has now also added the marathon to her list of achievements. Melissa works with children affected by genetic disorders. http://uk.virginmoneygiving.com/MelissaVenables

A huge congratulations and massive thank you to all our inspirational runners who completed the London Marathon 2015 raising an outstanding £30K to fund the support and care of children affected by genetic disorders across the UK. You are all superheroes!

Feeling inspired? Email events@geneticdisordersuk.org to find out how you too can support Jeans for Genes and Genetic Disorders UK.

Don’t forget to sign up for Jeans for Genes Day 2015 on Friday 18th September www.jeansforgenes.org/signup

How to have an eggcellent Easter!

Need some activity inspiration this Easter weekend? We’ve got you covered with a range of egg-cellent ideas to keep you and your family busy from morning ‘til night.

Decorate your eggs in Denim!

Easter-Eggs-Denim-7

We love this denim Easter egg tutorial from Ashbee Design, all you need is some small denim patches, some glue and a couple of eggs and you’ll have created these fab eggs in no time!

Why not take your denim decoration a step further and give your eggs their own Jeans for Genes Day look:

  1. Place your eggs in some eggs cups
  2. Draw faces on your eggs – you can add googly eyes, hair or hats, be creative!
  3. Wrap some old denim around your egg cup and glue in place to create a pair of jeans or denim skirt – you’re eggs are all set for Jeans for Genes Day!

easter-crafts-for-kids-egg-couple

For a super simple decoration idea, try dying your eggs blue!

easter-eggs-m

  1. Add some blue food colouring to a glass of water
  2. Dip your eggs in the water and set aside to dry
  3. Using some brown paint and a toothbrush, lightly dab all over the eggs to create a speckled effect, allow to dry and voila!

Easter Home Decoration

Now you’ve decorated your eggs, why not have a go at decorating your home too. We love Not On The High Street’s range of gorgeous Easter products!

original_blue-or-pink-decorative-easter-tree original_large-lavender-rabbit original_mini-blue1 original_pastel-easter-egg-fairy-lights

And these Easter Egg Hunt signs from Marks and Spencer are perfect for pointing you in the right direction to claim your eggs!

m and s signsNow all the decorating is done, sit back with a cuppa and enjoy a chocolate treat! Here are some of our favourite blue Easter eggs:

Jamie's egg

Jamie’s Easter Egg available at John Lewis

Sainsburys eggs

Sainsburys Taste The Difference Swiss Chocolate Eggs

blue mini easter eggs amazon

Blue Mini Easter Eggs available from Amazon

While you’re relaxing don’t forget to sign up for Jeans for Genes Day 2015 on Friday 18th September!

Guest Blog: A Special Mother’s Day Message from mum and Jeans for Genes Supporter Sara Jackson

Sara JacksonI recently attended a Leadership Symposium run by the charities Genetic Disorders UK and Global Genes.  Alongside me were many men and women who spend their time fighting for the rights of those affected by rare genetic disorders; be they parents, scientists, doctors or advocates, all of them working to make the lives of children with rare diseases better.

I came away with a head full of inspiration and information, but what is left now as I write this blog, is a heart full of the pain and hope of the mothers I met.

Many of these amazing women have chosen to face outwards to the world, in order to find ways to change and improve on what they had to fight to achieve.

I felt so proud to be part of this group, trying as I do to raise awareness and stand up tall.  Alongside my TV day job and mothering of my boys, one of whom has two rare disorders, I have chosen to help run the charity Chromosome 18 Europe and write children’s books, one of which is now a musical ebook called The Treehouse at Number 9, created to raise awareness for GDUK and all the rare gems out there.

Treehouse Genies Gang

The Treehouse Genies featured in The Treehouse at Number 9

So instead of being asked how I find the time, as is often the case, this weekend I was in the happy position of wondering and asking other women how they managed.  Managed to change the law, run a foundation, form a charity, build a network, create a science programme, put on a conference and strengthen a global movement.

I basked in the glory of this room full of champions, and realised that while there were 100 different conditions represented, what we have in common as parents, and mothers is bigger than all of that.  I believe strongly that it is our commonalities that will help us to go from a group of individuals, to a movement of many.

As parents of special kids we exist to navigate the world for our children and fight to keep them healthy. We don our armour to smooth the path and battle with the systems in order to give them the best future we can.  We often choose to do this by forming charities and finding others, pushing to make things easier for those that follow, often knowing that the benefit won’t be felt by us at all.

These are the things that we do, outside of the day to day, shape our lives as special parents, with no palpable reward.  However just knowing we might have helped even one person to have it a little bit easier is kind of priceless.

Sara Jackson's boys in Toronto

So Happy Mother’s Day to all the mums out there, special or otherwise, and all the dads and grandparents, siblings and friends who help us to do what we do.

Sara Jackson

Find out more on Chromosome 18 Europe here: www.chromosome18eur.org and check out Sara’s blog here: http://sarajinbetween.blogspot.co.uk/

Why not sign up for Jeans for Genes Day 2015 on Friday 18th September and help to transform the lives of children with genetic disorders.

London’s City Jeanius Crowned!

Our Jeanius Quiz went down a storm on Monday night in London as teams from offices across the capital battled it out to be crowned London’s City Jeanius 2015.

078

The Quiz took place in two of Drake and Morgan’s lovely bars, The Fable in Farringdon and The Anthologist near Bank, with entrants being offered a complimentary drink and nibbles, as well as the opportunity to buy a fabulous Blue Jean Cocktail with £1 being donated to Jeans for Genes for every Cocktail sold.

021

The night also played host to a fabulous raffle with prizes donated from top brands like Elemis, Lancôme, Ted Baker and Bombay Sapphire.

007082

Over 8 rounds the teams battled it out, testing their knowledge on everything from chocolate to city skylines, and genetics to geography, until the winning teams were crowned.

088 089 090 134 138

At The Anthologist, Credit Suisse pipped the rest at the post to take first place, whilst at The Fable, Sons of Pioneers stormed to an astonishing victory. First prize included dinner and drinks for 5 at The Happenstance & a bottle of Glenmorangie Whiskey, and a £200 voucher for The Phene & a magnum of Nicolas Feuillatte champagne.

162011

Thank you to everyone who came down, took part in the quiz and tried their luck at the raffle, we hope you had an amazing night whilst raising money for Jeans for Genes!

For more photos check out our Facebook: 

jeansforgenes.org/donate