World champion rower Sarah Winckless MBE is pulling people together to support families with Huntington’s disease (HD) who are struggling to cope during the COVID-19 pandemic.

The 46-year-old, who scored an Olympic bronze medal at the 2004 Games in Athens followed by two world championships in 2005 and 2006, was a student when she tested positive for the gene mutation that leads to the incurable condition. This means that Sarah will go on to develop symptoms of Huntington’s disease at some time in the future.

Since retiring from rowing in 2009 and becoming Patron of Scottish Huntington’s Association (SHA), Sarah balances her commitments as a commentator, umpire and Chair of the UK
Anti Doping Committee with campaigning to raise awareness about Huntington’s disease.

Now, as HD families adjust to the challenges of the COVID-19 outbreak, Sarah is taking part in SHA’s Stay Home and Step Up crisis appeal – which has so far raised £15,000 – and she hopes others will join her by donating, taking on a fun step challenge or hosting a virtual party and fundraising online.

Sarah said:

“My late mum had Huntington’s disease, we grew up with it and I know how difficult every day can be during the best of times, never mind in the midst of a global health emergency. Having the right support makes a huge difference and just now it’s especially important that SHA is able to make sure that no one in the HD community is left to face this crisis alone.

“The charity is a lifeline for anybody and everybody whose life is affected by HD, including many young people who now have extra caring responsibilities and those who aren’t able to visit loved ones in care homes.

“Our HD Specialists, youth advisors and Financial Wellbeing officers are working closely with families every day, helping with practical issues like accessing grants and allowances, keeping young people connected with friends in the SHA community, supporting carers and engaging health and social care providers.

“We’re relying on the kindness of others, especially now when fundraising events have

been cancelled and other income remains uncertain, and I hope people will join us and send a real message of hope and solidarity to HD families in their community.

“As an athlete, I’m particularly keen on the Stay Home and Step Up challenges, which are a great way to bring friends and family on board, while staying active in the house or exercising safely outdoors.”

In Scotland, 1100 people have HD and up to 6000 people are at risk of developing the disease and its severe symptoms, which include a deterioration in motor function, uncontrolled jerky movements, and the loss of ability to walk, talk, eat and drink. In addition to the complex physical changes, HD can cause mental illness, mood swings and personality changes. This combination of symptoms can require 24-hour care, meaning people with HD are no longer able to live in their family home.

The devastating toll on families is compounded by the reality that each child of an HD parent is at 50% risk of inheriting the faulty gene that causes HD, meaning they too will go on to develop symptoms.

SHA, the only charity in Scotland dedicated exclusively to supporting the HD community, carried out a survey of families in the early weeks of the COVID-19 outbreak. It found that 64% of respondents are worried about the mental health of a loved one with HD and the impact on other family members. Over 60% are worried they will become more isolated during the pandemic, while one in three is unsure about how easy it will be to access appropriate mental wellbeing support.

Nearly 50% of family members expressed concern that the person with HD in their household is at risk of police action because they don’t understand social distancing rules.

Changes in household circumstances are adding to the stress – 64% of families are worried about the financial impact of COVID-19 and one in three fears not being able to meet essential costs like food and fuel. A reduction in agency support means that 40% of families are also taking on additional caring responsibilities.

To join SHA’s campaign, please visit https://hdscotland.org/stayhomeandstepup/