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

Blog Takeover: Rare Disease Day

In her latest blog post, our Genetic Counsellor Emily discusses Rare Disease Day and how your support is helping to change the lives of children and families affected by rare genetic disorders.

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“As many of you will know, Rare Disease Day is coming up soon on 29 February. About 80% of the 7000 known rare diseases have a genetic cause. Rare Disease Day is a fantastic opportunity to raise awareness of genetic conditions amongst the public, healthcare professionals, researchers and policy makers.

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As a group, rare diseases are not actually that rare, they will affect about 1 in 17 people at some point during their lives. Unfortunately it still takes an average of 7 years from the onset of symptoms for a rare disease to be diagnosed, and there are still many people who remain undiagnosed. At Jeans for Genes, we understand the many challenges that individuals and families with a rare health condition face. There is often very limited information available, most health professionals have never heard of the condition, it can be unclear how the condition should be managed and it is often very difficult to gain access to the right health services, social care, benefits and educational support. It is not unusual for families to feel isolated and disempowered.

We have supported many people by finding information about their rare condition and explaining it in a clear way. We help families with the same rare disorder to find one another by working with them to set-up a Network page for their condition on our website. We recently created a page for the genetic disorder Norrie disease, which is thought to affect just 20 people in the UK. Through the money raised on Jeans for Genes Day, we also provide grants to genetic disorder charities to support their invaluable work at bringing together people with rare disorders, funding specialist nurses, key workers and much more. There is more information about our grant programme on our website.

In addition, the wonderful educational resources on the Jeans for Genes Day website help to raise awareness and give young people an insight into life with a rare genetic condition.

While we are working hard to minimise the impacts a rare genetic diagnosis can have, we know much more needs to be done, so please join us in jeans on Friday 23 September for the 21st Jeans for Genes Day and help us to transform the lives of children with genetic disorders.”

Blog Takeover: Genetic Counselling

In her second blog post, our Genetic Counsellor, Emily Clarke, discusses genetic counselling and the support we provide through our Genetic Disorders Helpline – funded through your incredible support on Jeans for Genes Day.

“When providing information and support through the Genetic Disorders UK Helpline service, I come into contact with many families who could benefit from genetic counselling. It is not unusual for enquirers to be unsure about what genetic counselling is or how they could get to see a genetic counsellor, so I thought it would be useful to tell you all a bit about the role.

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Genetic counselling involves a healthcare professional talking to you about a genetic condition or possible genetic condition affecting you, your child or another member of your family. They can assess the situation in your family by taking your medical and family history. They will usually draw your family tree to help with the assessment. They can explain what is known about the genetics of the condition and how it can be passed on in a family. Any options for genetic testing are also discussed and a test arranged if appropriate.

Importantly, genetic counselling also involves support with the emotional and family implications of a genetic disorder. This could be support with coping and adjustment to a diagnosis, or help with how to tell other members of the family about the possibility of the condition being passed on.

A range of healthcare professionals deliver genetic counselling, but it is most often provided by Clinical Geneticists (specialist genetic doctors) and Genetic Counsellors. Genetic Counsellors are healthcare professionals with graduate degrees and experience in the areas of medical genetics and counselling skills. There are about 300 genetic counsellors working across the UK, with the vast majority based in the 24 NHS regional genetic centres. You can find a list of specialist genetic centres on the Genetic Disorders UK website. There will be a genetic centre and genetic counsellor that covers your area.

To access genetic clinics and genetic counselling, you need to be referred to a genetic centre by your GP or hospital specialist. You can find out more about genetic counselling and genetic counsellors on the Association of Genetic Nurses and Counsellors website and the Genetic Counsellor Registration Board website.

You can also call the Genetic Disorders UK Helpline on: 0800 987 8987 or use our website contact page.”

Our Genetic Counsellor is funded through your amazing support on Jeans for Genes Day every year. Don’t forget to sign up for your free Jeans for Genes Day fundraising kit, and help us change the lives of children with genetic disorders on Friday 23 September 2016.

Blog Takeover: Our Genetic Disorders Helpline

Thanks to your support on Jeans for Genes Day, we’ve been able to fund a genetic disorders helpline with a dedicated Genetic Counsellor, Emily Clarke. In this series of blog posts, Emily will talk about some of the ways the helpline is making a difference to the lives of children and families affected by genetic disorders in the UK.

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“As a member of the dedicated team at the national charity Genetic Disorders UK, my primary focus is our expanding helpline service. We receive many enquiries every week, by email and phone, from people across the UK with questions or concerns about a genetic condition affecting them, their child or another family member.

In a recent enquiry, Becky phoned the service as her daughter, age 7, had just been diagnosed with a very rare genetic condition. Becky was understandably feeling overwhelmed and confused. No-one else in the family had ever developed the condition and Becky and her husband John, could not understand how their daughter had inherited the disorder. We were able to talk through how the condition is passed on in families, discuss their concerns, including whether their younger daughter might also develop the condition, and direct them to their local specialist NHS genetic service for further genetic counselling.

Our helpline aims to provide clear and accurate information about medical genetics, genetic testing and genetic services. We also offer crucial support and understanding of the many varied emotional and social impacts a genetic diagnosis can have for a family. It is not unusual for parents to experience feelings of guilt, there can be conflict among family members or distress about what could happen in the future. Our experience working with families, the personal experiences of team members and our training and expertise, has given us an in-depth appreciation of the challenges, as well as the rewards, of life with a rare genetic condition. I find I am constantly amazed and impressed by the determination, courage and strength of the parents and individuals I have contact with through our helpline and I learn from every person who gets in touch.

We always take a non-judgemental approach when responding to enquiries, providing balanced information and supporting people to decide on the best course of action for themselves.

When Raj contacted the helpline, he was worried about whether his future children may inherit his condition and what options may be available when he decides to start a family. After talking everything through, Raj was able to clarify that, for him, knowing the likelihood of his children inheriting his condition would not alter his plans for having a family. Instead it would just help him and his partner to prepare better for the potential needs of their children.

In providing this service I have become aware of how many people have worries about a genetic condition and are struggling to find understandable information or support from someone who knows what they’re going through.

We receive enquiries about all aspects of genetics from how do I get genetic testing to how can I set-up a support group and what research studies might be suitable for my child? We also help people to consider whether a referral to NHS genetic services would be of benefit, assist them to prepare for their genetic appointment and provide support following a consultation.

If you have any queries or support needs about a genetic condition please contact us at the Genetic Disorders UK helpline. To contact the helpline please call 0800 987 8987 or use our website contact page.”

Sign up for Jeans for Genes Day on Friday 23 September and raise funds for our vital helpline.