The purpose of the weekend

  • An opportunity for children/young adults with JHD and siblings to take part in some great activities – from horse-riding to abseiling!
  • Provide an opportunity to share information and learn more about JHD in a relaxed, informal setting

There is no cost to families for this weekend. The weekend costs are covered, including accommodation, activities and all meals. We will try and cover travel costs as far as possible, but the contribution made will depend on the total number of people attending the weekend.

Booking notes

The weekend is open to children, teenagers and young adults affected by Juvenile HD, their parents and any siblings.

The children/young adults with JHD and siblings usually take part in the adventure activities, and a separate programme is also offered for parents/carers including sharing sessions and outdoor activities.

The closing date for bookings is Friday 24th February 2017, and bookings may not be taken after this date. Places are limited and will be allocated on a first come, first served basis so please book early to avoid disappointment.

Some young people may not be aware of their diagnosis. Although we can try to avoid making the purpose of the weekend obvious to them, we cannot guarantee that they do not find this information out during the weekend, and parents should bear this in mind when deciding whether or not to book.

Families usually arrange their own travel, although if you need any assistance or would prefer to come by train and would like to be picked up at a local station, please contact us.

Please contact Cath Stanley on Tel: 0151 331 5444 or Email: if you have any queries about the weekend or want to know more about what happens. You can see a short video about the weekend here.

Download booking form

Categories: jhd

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