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McArdle Disease (GSD5)

Activity & Exercise

It is vital to keep active in everyday life and take regular aerobic exercise. We offer opportunities to learn practical techniques in an understanding and supportive atmosphere.

Children & Parents event, Wales, 2019

The event is now in its fifth year, and this time will be in the Pembrokeshire Coast National Park, South West Wales. Previously it has been held in both the Snowdonia and Brecon Beacons National Parks and this is our second visit to Pembrokeshire.

Children and parents from England, Scotland, France and USA.

The programme

In effect this is a mini-version of the walking course but with a greater emphasis on fun and making friends. The learning is more individual and the walks are shorter, and combined with visits and sightseeing that will help to fix the memories.

It is intended for children with McArdle’s and, due to limited accommodation, preferably just one parent. If requested, we will try to accommodate a second parent and/or unaffected siblings – please contact us if you would like us to look into this.

Travelling from overseas

In the past children and parents have attended from UK, USA and France. Those from outside the UK have often integrated attendance at this event into a longer family holiday in the UK, giving better value on the travel cost.

Setting off on a level path.

Dates of the event

The dates of the event are:
Wednesday 24 to Sunday 28 July 2019.

This is a day longer than we have usually done before, now more than a long weekend!

A chance to meet more adults

The first full day (Thursday) will be an overlap with the adult course, so there will be an opportunity for parents to meet with many more adult McArdle-ites. The two groups will be staying in neighbouring units at Stackpole – Shearwater (Children & Parents event) and Swan (adult course).

Old and young on the first Children & Parents event.

Details of venue etc as adult course

The details of leader, programme, the centre, testimonials, walks and travel are much the same as for the main course – but this event is shorter and much less challenging. Please see the previous tab regarding the walking course for all those details.

We shall be staying in “Shearwater” at the National Trust Stackpole Centre. This building has 3 x single, 2 x twin and 2 x five-bedded rooms. Two single rooms and one twin are ensuite, then there are four shared shower room/toilets.

Details and a few photos of Shearwater.

The cost of the event

The cost of the event this year will be free for affected children, £170 Sterling (approx. US $220) per adult, and £90 for unaffected siblings. This includes all accommodation, food and activities during the week, but you have to get to Pembrokeshire.

We do not want cost to be a barrier to attendance, so please contact us if you wish to discuss what is possible.

Lucy and Irene admiring a “tree” growing crystals – a present from the mother of a McArdle boy in Japan.

  BOOKING YOUR PLACE

 

Places will be allocated on a first come first served basis. There is a variety of single, twin and triple rooms. We will allocate family groups as best we can.

Click here for our on-line booking form.

Once your place is confirmed you will be asked to pay a deposit of £60 per head or the full amount. If you pay only the deposit the balance will be payable one month before the course.

Contact us with any questions
For any further information and questions please email Andrew Wakelin the McArdle’s coordinator.