Family Matters in Huntington’s disease 


Family Matters in Huntington’s disease 

We are enormously proud to have supported the Huntington’s Disease Alliance UK and Ireland with the conception and delivery of a unique campaign during Huntington’s Disease Awareness Month in May 2021.  

We created the Family Matters campaign to raise awareness of Huntington’s disease, an incurable, hereditary and degenerative disorder of the brain which significantly reduces life expectancy. Despite the huge burden the disease imposes on people living with it, and those who love them, there is very little real awareness amongst the general public. 

The Family Matters campaign was designed to show the enormous ‘ripple effect’ of Huntington’s within a family unit, to help the public realise the impact of this disease. We also wanted to celebrate the resilience of many of the families affected to help inspire and support the community, and to recognise that every family has a different experience.  

Our multi-channel communications campaign incorporated media news generation, a digital and social media strategy, and stakeholder relations. It was all underpinned with in-depth community research designed to reveal the impact of Huntington’s on the lives of everybody within the family unit. A Family Matters microsite was developed specifically for the campaign and housed the #LivingHistory project (a virtual shared space of 100+ snapshots contributed by people from within the Huntington’s community) amongst blogs, downloadable resources and more. We also created four powerful short films sharing the stories of people living with Huntington’s. 

A celebrity strategy involved working with Sarah Winckless MBE, former Team GB Olympic rower, who has the Huntington’s gene herself, and George Rainsford, an actor on Casualty, who was working on a Huntington’s story. We also sought support from other celebrities on social media and secured messages of support from the campaign from key stakeholder organisations. 

The campaign achieved outstanding results. The films alone achieved over 5,297 and 288 hours in total watch time on YouTube and media coverage was extensive in both national and regional media. Broadcast coverage netted over 6 million opportunities to see the campaign, and print and online coverage brought a further 380 million opportunities to see the story. The social media programme reached over 1.5 million people. The month-long campaign even resulted in four Huntington’s disease questions being tabled in parliament. 

The Huntington’s Disease Alliance UK and Ireland 
The Huntington’s Disease Alliance was established to promote awareness of Huntington’s disease and improve support for families across the UK and Ireland. The Alliance consists of four independent charities; Scottish Huntington’s Association, the Huntington’s Disease Association Northern Ireland , the Huntington’s Disease Association of Ireland and the Huntington’s Disease Association (which operates in England and Wales).