Inspiring fundraiser is shortlisted for this year’s Scottish Charity Awards

Lauren Boag

Lauren Boag from Insch, Aberdeenshire, has been shortlisted for this year’s Volunteer of the Year at the Scottish Charity Awards.

The 37-year-old volunteer fundraiser has raised over £35,000 for Scottish Huntington’s Association so far – an achievement 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 broadcaster Sally Magnusson in Glasgow on 20 June. Lauren is also in the running for the People’s Choice award which will be voted for by members of the public.

Married to Craig (36), Lauren discovered she has the Huntington’s gene when she was expecting their first child Eva, who is now nine years old. Huntington’s disease is caused by an inherited faulty gene that damages the brain over time. People can eventually lose the ability to walk, talk, eat, drink and care for themselves, requiring specialist support from those who understand the condition.

The disease is genetic, meaning it is passed down from one generation to the next.  Anyone with a parent who has Huntington’s has a 50% risk of inheriting the condition from them.

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 thrown herself into doing all she can to make sure that Huntington’s families have the support they need from Scottish Huntington’s Association.

“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,” said Lauren.

“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.”

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 Scottish Huntington’s Association, the only charity in the country exclusively dedicated to providing expert and personalised support for those impacted by Huntington’s disease.

It delivers personalised support through a nationwide network of Huntington’s Disease Specialists, Specialist Youth Advisors and Financial Wellbeing Officers to reduce unnecessary hospital admissions; support carers and other family members; lower household poverty; and alleviate wellbeing risks to children and young people living in Huntington’s families.

“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,” said Lauren.

“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 that she does for the Huntington’s community. She is a remarkable volunteer fundraiser who is also increasing much needed awareness about Huntington’s amongst 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, said: “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 24 May 2024.

Lauren Boag

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