The annual Juvenile Huntington's disease family weekend is an activity-packed trip for those with Juvenile Huntington's and their families.
The Juvenile Huntington's disease family weekend was held at the Calvert Trust, a disabled activity centre in the Lake District and was attended by 11 families.
The weekend has a programme of activities for the young people with Juvenile Huntington's, their siblings and their parents. Activities this year included: horse-riding, canoeing, rock climbing, graffiti session and swimming - not forgetting this year's beach-themed party which all of the families loved.
Having an opportunity to spend time with parents and to spend time with my daughter, looking at the smile on her face canoeing. Also being able to talk to [other] parents.
The parents had a sharing session on equipment and adaptations called ‘Armed and Ready’ which was facilitated by one of our Specialist Advisers and was about the equipment and adaptations that can be helpful to manage some of the challenges that Juvenile Huntington's brings. We also created a ‘spa’ session for the parents on Saturday afternoon, where we made use of the Calvert Trust sensory pool and jacuzzi along with offered individual reflexology sessions.
On the Saturday evening, we had a graffiti art session, and some amazing personal graffiti boards were created which they got to take home or gift to someone special. They painted flowers, musicians, animals, football teams and two very special pieces to commemorate The Calvert Trust and Huntington's Disease Association. This workshop was a new addition to the weekend that went down really well with both the parents and young people. It was nice to see everyone getting creative and to also be able to take something home to keep from the weekend. A special thank you to graffiti artist, Jamie from Street Style Surgery for holding the workshops.
Sunday morning, the parents had the opportunity to be out in nature building fires and toasting marshmallows, followed by archery. These were both excellent, less formal ways to continue sharing and building relationships.
The best thing about the event is that everyone is there for each other in all areas. Whether it is just friendly chat or discussing day-to-day struggles. No judging, no criticism. Just pure compassion.
This year, following feedback from families, we trialled offering an additional activity on the Sunday afternoon and the option to stay until Monday morning. The additional activity was a group trip to the Wildlife Park followed by a film in the evening. Almost all of the families stayed for the extra night.
It is always very powerful to see the families all together and see them relax as the weekend progresses. Some of the young people as well as some of the parents have made some really deep friendships which have continued outside of the weekend.
Being able to be truly me and allow my emotions to flow which have been blocked all year. It’s as though this weekend because of being with families allows me to be ME! Thank you so much.
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.
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.
The weekend was part-funded by the BigGive Christmas Challenge matched funding campaign, in which the support of a major donor, and the Hospital Saturday Fund, helped us to match donations from the public and double our impact.
We also received generous support from the Sandra Charitable Trust, the Bruce Wake Charitable Trust and The Boshier-Hinton Foundation. We really appreciate everyone who helped us to provide this unforgettable experience for those with Juvenile Huntington's and their families.
