Scots mum lives knowing she will develop same progressive disease as mother

Lauren with husband Craig
Lauren with husband Craig -Credit:Supplied


A Scots mum-of-two lives with the knowledge that she will one day go on to develop the same progressive, genetic disease that has already robbed her own mother of her health and mobility.

Yet, Lauren Boag’s response to the realisation that she has inherited the faulty Huntington’s gene that damages the brain over time was to throw herself into a mammoth fundraising undertaking that has seen her raise a remarkable £35,000 for Scottish Huntington’s Association – the only charity in the country exclusively dedicated to providing expert and personalised support for those impacted by the condition.

Now, 37-year-old Lauren has been shortlisted for this year’s Volunteer of the Year at the Scottish Charity Awards. Lauren’s achievement is made even more remarkable, given the demands of a busy home life and working full-time as a recruitment specialist for government organisations.

Run annually by the Scottish Council for Voluntary Organisations (SCVO), the Scottish Charity Awards celebrate the best of Scotland’s voluntary sector. This year’s shortlist includes 39 individuals and organisations from charities and voluntary groups across the country following a record-breaking number of nominations.

The winners will be chosen by a judging panel and announced during a ceremony hosted by author and broadcaster, Sally Magnusson, in Glasgow on June 20. Lauren is also in the running for the People’s Choice Award which will be voted for by members of the public.

Lauren and Craig Boag, and daughters Sienna and Eva, raise funds at the Kiltwalk -Credit:Supplied
Lauren and Craig Boag, and daughters Sienna and Eva, raise funds at the Kiltwalk -Credit:Supplied

Married to 36-year-old Craig, Lauren discovered she has the Huntington’s gene when she was expecting their first child Eva, who is now nine years old. After struggling to come to terms with her test result, Lauren decided to throw her energy into doing something positive for herself and others who are impacted by the complex neurological condition.

She began fundraising in 2018 while on maternity leave after having their second child, Sienna, who is now six years old. Since then, from Kiltwalks and bridge-swing challenges, to organising annual gala balls, psychic nights and, most recently, a Taylor Swift tribute event, Lauren has given her all to making sure that Huntington’s families have the support they need from Scottish Huntington’s Association.

Lauren, of Insch, Aberdeenshire, explained: “My gran was diagnosed with the disease, followed by my mum soon after. I was going through the testing process when I discovered I was pregnant. Being told I will develop Huntington’s disease at some stage was like getting hit with a brick, especially when we were expecting our first baby.

“Craig has never wavered when it comes to me and our girls, but it was very hard on him too. We look after one another, especially during the tough times, and it took time for me to turn around and create something positive for us to hold on to. I can’t stop this disease, but I can do something to help Huntington’s families by fundraising for Scottish Huntington’s Association.

“Sienna was in a buggy for her first Kiltwalk and we’ve done it every year since. The girls love it. Eva says she enjoys doing something to help her grandma. It’s important for me that we make great memories and the girls can see us having fun as a family, despite what lies ahead.

“We’re always honest and open with them about the disease. They know that their grandma has Huntington’s and that I will develop symptoms at some stage. We can chat about it any time, but right now we’re living our best lives.

“That doesn’t mean I don’t worry. Thinking about the unknown and how the symptoms could develop can keep me awake at night. I dread the thought of losing my spirit or the memories that are so precious to me, and it’s upsetting knowing what people in our family are going through because of this disease.

“But I choose to focus on the positive and I have great hope that there will be a breakthrough by scientists and researchers to find a treatment.”

Craig and Lauren Boag with girls Eva and Sienna
Craig and Lauren Boag with girls Eva and Sienna -Credit:Supplied

Lauren knows she can contact her local Scottish Huntington’s Association HD specialist or specialist youth advisor and is thankful for how her parents are supported by the charity. It delivers personalised support through a nationwide network which helps to reduce unnecessary hospital admissions, supports carers and other family members, lowers household poverty, and alleviates wellbeing risks to children and young people living in Huntington’s families.

Lauren continued: “My dad says he’d be lost without Scottish Huntington’s Association, especially as mum’s symptoms have progressed. She’s no longer able to walk and is now in a wheelchair. People ask me why I put so much energy and time into fundraising for the charity. I think it’s because Huntington’s disease takes things out of my control, while doing what I can and choosing to be positive puts some control back into my life.”

Scottish Huntington’s Association chief executive Alistair Haw said: “We are extremely grateful to Lauren for all she does for the Huntington’s community. She is a remarkable volunteer fundraiser who is also increasing much-needed awareness about Huntington’s among the wider public, while inspiring others to get involved in supporting us towards the day when everyone whose life is impacted by this disease is able to access the specialist support they need.

“May is Huntington’s Disease Awareness Month and Lauren is continuing to do what she can by sharing her experiences and preparing for the Kiltwalk in Aberdeen while organising her annual ball, which sells out every year and brings people together in support of Huntington’s families.

“We can’t think of anyone who deserves this award more and hope as many people as possible will vote for her in the People’s Choice category, too.”

Anna Fowlie, chief executive of SCVO, added: “Our 39 finalists demonstrate just how essential the voluntary sector is to Scottish society, with dedicated organisations and individuals going above and beyond to make a positive and often life-changing impact in their communities. Everyone at SCVO is looking forward to shining a light on their essential contributions at our awards ceremony in June.

“The public has the chance to celebrate each of our finalists through the People’s Choice vote, so don’t miss your opportunity to get involved and get behind your favourite finalist by voting now.”

Members of the public can cast their vote for the People’s Choice Award by visiting scvo.scot/vote before 5pm on Friday, May 24.

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