Children’s & families
Activity GrouP

Children and their families living with rare conditions can often feel isolated and may rarely meet someone else with the same disease. CRDN wanted to provide a safe and welcoming space for children with a range of rare conditions to be able to meet locally for fun,  friendship and confidence building activities.

In 2015 we formed a small dance group for children living with a range of rare conditions from the Cambridge area. Choreographers from professional contemporary dance group, Collective Arts Movement,  helped the children to express themselves in whatever way they felt comfortable and able. Their inaugural performance was at the Sobi charity ball in April 2016, and it was a great opportunity for these little superstars to shine! All proceeds from the ball supported CRDN, the Haemophilia Society and Rare Disease UK, and the hosts, Sobi, are a pharmaceutical company focusing on rare diseases, so the whole night was a brilliant celebration of the rare disease community.

We often think of rare diseases in medical terms and it’s easy to lose sight of the children and families at the heart of our work. The kids rehearsed together weekly for several months, and over that time a lovely sense of community has emerged as the children and their families built friendships and supported each other. We received this beautiful letter of thanks from the parents of the Unique Feet children.

Firstly we just wanted to write and express a big thank you to all at CRDN for allowing Jo and Ekida to develop the concept of Unique Feet and for the support and investment you have given to the project.
As you will be aware Unique Feet’s motto is “Life may not be the party we hoped for, but while we’re here we should dance” and that’s what the children were able to do on Friday with your support. As you appreciate it can be very difficult and frustrating at times raising a child with rare diseases/syndromes, purely because health care professionals are not always aware of the condition or how best to treat them, therefore its refreshing to know organisations like yourselves are working closely with key companies to improve the lives and experiences of patients with rare diseases. This event not only gave us an opportunity to raise awareness of our own child’s conditions but more importantly remind people that behind each rare disease and syndrome is a very special and unique individual.
Unique Feet has been valuable for both the children and us as parents. The children have formed a very special friendship, but more importantly were welcomed in a friendly, safe and compassionate environment where they could truly be themselves. We wrote as our contribution for the national rare disease day “all children need is a little help, a little hope and people who believe in them and beautiful things can happen” Unique feet has definitely provided this and hopefully was demonstrated within their performance. For us as parents its been great to network, discuss issues with people who truly understand the daily challenges we all face, but again helped form new friendships as sometimes isolation can occur. We are all hoping this is just the beginning of this special group.
No words can truly describe what it’s really has meant to us all, to be part of this group. I suppose we should let the actual performance do the talking! We saw four very special children who face daily challenges come alight on stage with confidence and grace.

 

 

In autumn 2017 we were delighted to be funded by a People’s Health Trust grant using money raised by HealthCommit 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.

Our Activities 

We do a range of activities which are fully accessible to all involved.

 * Dance – projects to create performances for a charity ball and RAREfest18

* You Can Bike Too – accessible cycling at Milton Country Park

Yoga – suitable for all abilities

* Horseriding – suitable for all abilities

* Get together’s and day trips – for birthdays, Christmas and during school holidays

It’s wonderful to see friendships and community developing amongst our local families affected by rare conditions.  The group is a wide mix of children of different ages.

Live in Cambridgeshire and what to get involved? Contact Jo for more info.

TAKE A LOOK AT OUR Unique Feet video!

If we all got involved, imagine the difference we could make? Don’t just follow us, interact with us and join our thriving rare disease community! There’s lots of ways right here to begin your journey with us…

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