Jeans for Genes Day 22 September 2017

Who’s taking part in #jeansforgenes on Friday? We are and can’t wait to see what our partners get up to Duxford Primary School Cambridge University Health Partners and Association of Medical Secretaries and Practice Receptionist

If you’re down at Addenbrookes Hospital Outpatients on Friday they’ll be taking part for CRDN

Thanks to Jeans for Genes Genetic Disorders UK for the opportunity to get involved

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Join the Cambridge Rare Disease Network on Jeans for Genes Day 22 Sept 2017

Join the Cambridge Rare Disease Network on Jeans for Genes Day

Apply for your free fundraising pack to support Cambridge Rare Disease Network and Genetic Disorders UK here

Did you know that half a million children in the UK are affected by a life-altering genetic disorder? Jeans for Genes Day is an annual fundraising campaign, organised by Genetic Disorders UK (GDUK), to raise awareness and money to transform their lives. This year’s event will take place on Friday 22nd September, and to a500,000 childrenachieve an even greater impact, GDUK are partnering with smaller genetic disorder charities like CRDN to help them spread the word, and in return, split the proceeds.

Would you or your school or workplace like to take part in this year’s Jeans for Genes Day for CRDN?

All you have to do is sign up on the official GDUK page, choosing Cambridge Rare Disease Network as your partner from the drop-down list, and encourage your pupils or colleagues to wear jeans on the day in exchange for a small personal donation. Extra fundraising iideas, such as cake sales or quizzes, are most welcome too!

Once you transfer the proceeds to GDUK, they will then transfer half to us for everyone we help to sign up. One exception – if you’ve taken part in Jeans for Genes Day in the last three years please DO  take part, but all of the money raised will go to GDUK.

As hundreds of schools and workplaces take part each year, this is a great way for your pupils and colleagues to feel like an important part of the wider movement to end genetic disorders. For schools, it is also an opportunity for you to educate your students about the science of genetics, to promote equality of people affected by rare conditions, and to highlight the importance of charity and social responsibility.

 Need some help? The Jeans for Genes website is packed full of helpful resources like posters, sponsorship forms, educational leaflets, assembly ideas etc for schools, nurseries  and workplaces  a social media pack and arts and crafts ideas.
The of the money donated to us on Jeans for Genes Day will be used to help CRDN develop a regional network and forum of Rare Disease patients and their advocates and families, to support our Unique Feet children and young people’s social group and to run exceptional Rare Disease educational and networking events. Raising the profile of Rare conditions and valuing, celebrating and supporting those living with Rare Disea
se through life’s journey could be something you and your team or school could help us make this happen. If you have any questions about CRDN or Jeans for Genes Day, please don’t hesitate to get in touch  on info@camraredisease.org

Parachute Jumping for CRDN

parachuteSix incredible ladies, Helena Baker, Zoe Napier, Emily Mortimer, Lisa Griffin, Caroline Churn and Juliette Newton will be parachute jumping for CRDN on the 4th June!! We’ll be there to cheer them on and watch them fly at Beccles Airfield, Norfolk. Please help our courageous ladies achieve their £1,800 fundraising target by donating through Helena’s Just Giving page, Emily’s Just Giving Page and Zoe’s Just Just Giving Page

So why CRDN?   Helena Baker is Vice President of the Nursing Medical Research Network and was one of the key speakers at our event in March 2016, where we discussed the potential need for a rare disease nursing service.

Helena BakerHelena was born with Fibular Hemimelia, a rare congenital disorder that left her, in her own words, with one leg shorter than the other– a tiny club foot, lots of missing ligaments in her leg and body, and a fierce determination not to let any of these problems stop her from doing what she wanted in life, except perhaps play hockey. Helena recalls growing up having more operations than hot dinners, but never received a diagnosis.

Eventually, just before she turned 50, she was told of her diagnosis. Doctors were clear there was nothing her mother could have done during pregnancy that would have changed the outcome. She is sure that having had a diagnosis earlier would have made a world of difference to her parents.

Helena has been recovering from more surgery having had her right leg amputatedHelena BakePNG below the knee last September and is currently learning to walk again. She is continuing to make a great recovery as she’s getting to grips with her new prosthetic leg.  Unfortunately there’s been a slight set back with Helena breaking her remaining ankle. Helena says “On the day, I’m not allowed to jump wearing my prosthetic leg and I’m also not allowed to land on my recently broken one remaining ankle.  So I’m going to land on my instructor who will be delighted.  I’m planning on testing them out beforehand for looks and comfort. “ Helena’s grit and good humour never cease to astound us. She reassured us  “we are approaching our impending doom in the spirit of total denial, all desperately trying to pretend that it’s not happening”.  That’s the spirit Helena!!

Because of her strong belief that having access to a rare disease nursing service would have been a huge support to her and her family, she has decided to take on a parachute jump on Sunday 4th June 2017 at Beccles Airfield alongside Zoe Napier, Emily Mortimer, Lisa Griffin, Caroline Churn and Juliette Newton, to help raise funds for CRDN towards their goal of establishing such a nursing service for those with rare diseases.

Thank you for your support and good luck and a huge thank you to Helena and her team!!