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Huntington's Disease Association Case Study

Huntington’s Disease Association

highlighting the value of family events for those with HD

Each year the Huntington’s Disease Association holds a family weekend event for people who are affected by Juvenile Huntington’s Disease (JHD), a particularly rare early-onset variant of Huntington’s Disease whereby individuals exhibit symptoms before the age of 20. The weekend provides an opportunity for affected families from all over the country who wouldn’t normally meet to get together, share experiences and support each other in a safe, friendly and understanding environment.

This year’s event was held over a sunny weekend in June at the Calvert Trust activity centre in the Lake District. The HDA asked us to come along and film some interviews with parents of children with JHD, so they could share their experiences and talk about the challenges they face. The idea was then to create a DVD that could be distributed and used as training material, to help those involved in supporting JHD-affected families to better understand the impact the condition can have.

In addition to the interviews we also filmed the children and their families taking part in a range of activities, from canoeing to rock climbing, demonstrating how they can have a great time and take a positive attitude towards life despite difficult circumstances. Following the weekend we created a short video clip of each family we interviewed, as well as a summary video showcasing the weekend, shown above.

We thoroughly enjoyed working with the HDA and hope these DVDs will be of great use to them! This is a great example of a case where video can be used to help connect together people who are spread out geographically and add a human, emotional connection to a situation.

“Thank you for the DVDs, we are delighted with them!”

Cath Stanley, Chief Executive

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