People’s Health Trust grant makes a world of difference to our Unique Feet group

People’s Health Trust grant makes a world of difference to our Unique Feet group

People’s Health Trust grant makes a world of difference to our Unique Feet group

Cambridge Rare Disease Network - People's Health Trust grant makes a world of difference to our Unique Feet group 1

In autumn 2017 we were delighted to be funded by a People’s Health Trust grant using money raised by Health Commit through the Health Lottery to help grow and develop our Unique Feet children’s activity group. People’s Health Trust is an independent charity funded by 51 local society lotteries and the money they raise through The Health Lottery and we are honoured to have received their support.

We’ve welcomed new members of all ages over the last few months and have been getting involved in all sorts of fun. The group began by meeting weekly for yoga sessions with Emily, our trusted Unique Feet supporter who has worked with us from it’s first steps in 2016.
Cambridge Rare Disease Network - People's Health Trust grant makes a world of difference to our Unique Feet group 2

So why yoga?

As our poster explains, yoga helps children to develop greater body awareness, improves attention span, supports them to develop muscle tone, flexibility, circulation and lung capacity.

The health benefits are significant but benefits come also in their confidence and they learn new skills and surprise themselves at what they can achieve together.  Most of all they have a chance to meet together and have fun!

Cambridge Rare Disease Network - People's Health Trust grant makes a world of difference to our Unique Feet group 3
The better weather has allowed the group to move on to outdoor activities now and they’ve been taking part in the weekly You Can Bike Too project. This is a brilliant award winning, all-ability cycling project delivered at Milton Country Park and the only project of its kind in Cambridge.

There are a wide range of bikes to suit individuals or groups which are great fun to try.  We’ve been trying out the colourful array of specially adapted bikes to help those with disabilities to take to their wheels and to support others to build confidence in riding.

Cambridge Rare Disease Network - People's Health Trust grant makes a world of difference to our Unique Feet group 4
Cambridge Rare Disease Network - People's Health Trust grant makes a world of difference to our Unique Feet group 5
Cambridge Rare Disease Network - People's Health Trust grant makes a world of difference to our Unique Feet group 6
Siblings joined us for a Christmas Party, and for bouncing fun at xtreme 360 trampoline park at Easter and there are horse-riding lessons planned for the summer term.  So much fun to look forward too!

It’s wonderful to see friendships and community developing amongst our local families living with rare conditions who can often feel isolated. The group is a wide mix of children of different ages and all with different conditions.

Cambridge Rare Disease Network - People's Health Trust grant makes a world of difference to our Unique Feet group 7

Pint of Science Festival welcomes rare disease!

Pint of Science Festival welcomes rare disease!

Pint of Science Festival welcomes rare disease!

CRDN hosts a rare disease themed pub for the annual international pint of science festival…

Pint of Science is a non-profit organisation that brings some of the most brilliant scientists to your local pub to discuss their latest research and findings with you.

In 2012 Dr Michael Motskin and Dr Praveen Paul were two research scientists at Imperial College London. They began by organising an event called ‘Meet the Researchers’. It brought people affected by Parkinson’s, Alzheimer’s, motor neurone disease and multiple sclerosis into their labs to show them the kind of research they do. It was inspirational for all involved.

They thought “if people want to come into labs to meet scientists, why not bring the scientists out to the people?” And so Pint of Science was born.

In May 2013 they held the first 3-day festival in Cambridge, London and Oxford.

Our events manager, Jo Balfour, co-hosted the Cambridge Neuroscience pub that first year in collaboration with Dr Hannah Critchlow, author of Ladybird Expert Series book, Consciousness.

Pint of Science quickly took off around the world and now happens in nearly 300 cities covering all manner of scientific topics.

We were delighted to be given the opportunity to host a rare disease themed pub in Cambridge during the festival!

The chance to host a pub, at an international festival with 19,500 twitter & 21,000 facebook followers, helped us put rare firmly on the menu

We hosted two evenings at Cambridge’s trendy drinking hole, Thirsty.  Both nights were sold out and we packed into their back room to hear about exciting research into rare disease taking place on our doorstep and personal stories of living with rare disease. Our speakers ranged from well know Cambridge rare disease expert Dr Lucy Raymond to emerging shining light, PhD student Patrick Short.  A huge thank you to all of their speakers for their fascinating talks, their personal stories and for getting involved in the fun.

For the full line up, speaker bios and talk synopses click on the links below.

Treasure Your Exceptions

Rare Disease: The Genomic Revolution, Searching for Cure for the 1 in 17

Cambridge Rare Disease Network - Pint of Science Festival welcomes rare disease! 10
Cambridge Rare Disease Network - Pint of Science Festival welcomes rare disease! 11

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