Our Juvenile Huntington’s disease family weekend took place between 3-5 June.

This year we were excited to return to the Calvert Trust for our first in-person family event in three years! The weekend is packed full of activities for those affected with Juvenile Huntington's disease and their families.


The weekend is usually a mix of families who come regularly each year and those who have come for the first time. This year we were joined by 12 families. 

“I’ve been coming here for a few years now and every year, I look forward to coming and I’m never disappointed."


We offer a programme for both the young person with Juvenile Huntington's disease, their siblings and for parents. Activities this year included: canoeing, rock-climbing, zipwire, cycling and swimming. This was followed on the Saturday night by a Jubilee themed red, white and blue party. We also had a photobooth, which was very popular!


“We made new friends who are in the same situation as ourselves, people who can understand and empathise with us.” 


A regular comment from families that come is how welcomed and relaxed they feel at the weekend. It has been lovely to see families make connections that last outside of the weekend, especially after these three years. We hope we will be able to welcome lots of families again next year, whether you've been before or not!

Helen Santini, Specialist Juvenile Huntington's Disease Adviser said:

"The Calvert Trust looks after us really well, even putting on some beautiful weather for our Friday night evening walk (or maybe that was us?!). Either way, there was beautiful weather and beautiful views!"

Thank you to all of our wonderful volunteers who helped make the weekend possible.

We also run regular Juvenile Huntington's disease family zooms. If you have any questions about the weekend or about the virtual meetings, please contact Helen Santini on helen.santini@hda.org.uk or call 01279 507656.