TEAM GB Olympic medallist and former double World Champion rower Sarah Winckless MBE, and actor, George Rainsford (Casualty, Call the Midwife), have announced their support for the Family Matters campaign.
The initiative was created by The Huntington’s Disease Alliance (the Huntington’s Disease Association, Scottish Huntington’s Association, Huntington’s Disease Association Northern Ireland, and the Huntington’s Disease Association of Ireland) which aims to raise awareness of the condition across the UK and Ireland.
Huntington’s disease is a rare and hereditary disorder of the brain which causes people to deteriorate physically, cognitively and mentally – yet there is little awareness of the condition and its impact on families. The Family Matters survey, also launched today by the Huntington’s Disease Alliance, revealed that 91% of those with the disease found that most people they told about the condition didn’t know what it was. Additionally, over half (55%) of carers said that their loved one has been wrongly accused of being drunk or on drugs due to displaying symptoms of Huntington’s. It’s not just those who have the condition who are affected – 72% of family members who tested negative for the gene felt guilt or shame about relatives who do or who may have Huntington’s.
Sarah Winckless MBE, the former Team GB rower who made history as the first woman umpire of the Oxford-Cambridge boat race last month, is Patron of Scottish Huntington’s Association and an avid campaigner for Huntington’s disease families. Huntington’s is in Sarah’s family and she has tested positive for the faulty gene that leads to the disease herself.
“I believe this last year has given many of us an idea about what it means to be isolated or alone. When a family is navigating this disease, the lack of public awareness, and therefore empathy and understanding, isolates families and can make them feel they are facing the challenges alone. I am delighted that the Huntington’s Disease Alliance is working together to achieve the greatest impact we can.
“When people understood what was happening to Mum, they were incredibly generous and supportive, adapting to what she needed so she was able to keep doing as much as she could for as long as she could. This helped us as a family and for that, I am incredibly grateful. Through this campaign, I want to increase the awareness of Huntington’s disease so others can have the knowledge and confidence to support their friends and neighbours.”
George Rainsford plays a doctor who loses his mother to Huntington’s disease and tests positive for the gene himself in the BBC Drama, Casualty.
Having completed detailed research for his character, he said:
“The impact of Huntington’s disease can be incredibly difficult for those living with the disease and for their loved ones. It has been fascinating, heartbreaking, life-affirming and humbling talking to Huntington’s disease families who have shared their experiences. I am supporting the Family Matters campaign to raise awareness of Huntington’s disease so that the public understand not only how devastating the disease can be but also to celebrate the amazing strength and positivity that some families with Huntington’s have.”
Cath Stanley, Chief Executive of Huntington’s Disease Association, which represents the Huntington’s community in England and Wales, and one of the members of The Huntington’s Disease Alliance UK and Ireland, said:
“Huntington’s disease is often described as a ‘disease of families’ as not only is it hereditary, but also no family member is left untouched by it. Many find it difficult to receive equitable access to information and specialist services leading to delayed diagnosis and limited physical and mental support following diagnosis. That is why we are determined to raise some of the issues around living with the condition so that those affected feel they are adequately supported. The Family Matters campaign will, we hope, go some way to dispelling some of the myths around the condition as well as breaking down some of the barriers that the Huntington’s community have to live with on a day by day basis.”
The Family Matters campaign also invites those who have experience of Huntington’s to contribute pictures, words and thoughts to a shared digital community space, called the Living History Project. Four poignant short films sharing the stories of families living with Huntington’s will also be included on the Family Matters website to raise awareness of the disease.