This year, we celebrated 20 years of our Juvenile Huntington's disease family weekend.

Over the years, we’ve had 53 families (192 attendees in total) join us for our special, annual family weekend. Many of those who have joined over multiple years. This does not include the 68 volunteer leaders who have supported us by attending each year.

The Juvenile Huntington's disease family weekend was held at the Calvert Trust, a disabled activity centre in the Lake District. The weekend has a programme of activities for the young people with Juvenile Huntington's, their siblings and their parents.

Activities for the young people included rock climbing and giant swing, horse experience, high ropes, zip wire and swimming, as well as a group trip to a Wildlife Park for the whole family to enjoy.

Seeing my daughter and all the families enjoying moments of joy is priceless…Thank you for organising and making precious moments we can cherish forever.

The parents are offered their own programme, which runs alongside children’s activities. A chance for them to meet, share experiences, and enjoy some respite. We held a spa morning so they could enjoy the pool, jacuzzi and sauna as well as an individual reflexology treatment. Parents were also able to join a facilitated session on wellbeing, giving them a chance to share their experiences.

It is a place of togetherness.  No boundaries, just the freedom to talk and not be judged.

During the evening, the families get the chance to relax together, this year that included an evening walk and swimming in the pool. Every year a themed party takes place on the Saturday night. In keeping with the 20th anniversary colour scheme, the party theme was black and gold. It included a drinks reception, photobooth and a DJ with karaoke. This is a really special night for the families to make lasting memories together.

A few words from Helen Santini, Juvenile Huntington's Adviser

There have been many standout moments over the past 20 years, and this year is no exception!  What has always stood out about the weekend is the connections people have made, and whether someone has been coming for many years or come for the first time they find friendship and people that understand. I want to thank everyone who came this year or who has come before for bringing that friendship and understanding every time to the weekend, and for supporting each other.

The Calvert Trust

The Calvert Trust allows us to have truly accessible activities with brilliant facilities as well as excellent staff. We have been holding the weekend here since 2007 because of the confidence that they give us that we will be able to make this a truly inclusive weekend for everyone, and as stress-free for the families as it can be coming away from home whilst managing any additional needs their child has.

Everyone is involved one way or another.  The disabled person is treated like an able-bodied person and given the opportunity to get involved!

Thank you to our funders

We'd like to thank all of our funders and supporters who helped make the 2024 Juvenile Huntington's disease family weekend happen. 

We received generous support from the Sandra Charitable Trust, Bruce Wake Charitable Trust, Hodge Foundation, JD Foundation, Enabling Adventure Funding (through Calvert Trust) and Nationwide Colleague Grants programme (nominated by one of our community members).

We really appreciate everyone who helped us to provide this unforgettable experience for those with Juvenile Huntington's and their families.

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