SHA’s Senior Leadership Team is responsible for shaping the charity’s objectives and ensuring we achieve them. It is guided by and accountable to our Board of Trustees, and supported by the Extended Leadership Team. Every SHA staff member has a representative on the Extended Leadership Team in line with SHA’s commitment to good communication and collaboration across the organisation.
“I feel honoured to work for Scottish Huntington’s Association and it is rewarding to know that our work to support families is making a real difference. We have a superb team of family members, HD professionals, trustees, supporters and volunteers who are all passionate and driven to deliver the best outcomes for the Huntington’s community. This role is my biggest career challenge but I am well supported and very much part of the team as we continue to strive for improved specialist services for all families.”
Susanne was appointed as Financial Controller in 2022 after working at the charity for nearly four years in senior finance and administration roles. She brings a wealth of finance experience and knowledge gained from working in the third, public, financial services, social economy and retail sectors.
“It’s an incredible privilege to work with the HD community. I feel inspired daily by the resilience, strength and determination shown by people living with the disease and by their families/support networks. What am I most proud of? The day-to-day work of SHA – our direct support for families, the work we do to break down the stigma that surrounds HD, and educating health and social care staff. I also enjoy working alongside like-minded colleagues who are striving to improve the equality of, and access to, specialist services throughout Scotland.”
Linda joined SHA in 2009 as Senior HD Specialist in the Lanarkshire service. A qualified Occupational Therapist, Linda knew from early on in her career that she wanted to specialise in working with people living with neurological condition. Having initially joined SHA to gain ‘a couple of years’ experience’ and to build upon her existing skills and knowledge, Linda has progressed to a more senior role and remains with the charity more than 12 years later.
“I am hugely grateful to the Board for putting its faith in me to lead the charity. It is a privilege to work with our Trustees, our amazing staff, inspirational HD family members and supporters as we move forward together to ensure everyone in our community has access to the specialist care and support they need.”
Alistair became CEO in 2021, having spent the previous five years as SHA’s National Care Framework Lead, developing the world’s first National Care Framework for Huntington’s Disease. Backed by the Scottish Government, the Framework has been implemented by NHS Boards and Health and Social Care partnerships across Scotland - and has attracted global attention.
Prior to joining SHA Alistair worked as a political and media advisor at both the UK and Scottish parliaments and Account Director and Devolved Nations Lead at communications agency Kindred. He led award-winning teams as Campaigns and Media Manager - then Head of Media and PR - at Prostate Cancer UK, and is Trustee of the Neurological Alliance of Scotland and Glasgow 278 Boys’ Brigade.
“Scottish Huntington’s Association is a small but very mighty organisation. It has extremely strong connections with families in the Huntington’s disease community and with the supporters who make the charity’s work possible. I am inspired by the expertise and commitment of our staff, and by the the HD community which has for so long been misunderstood, ignored and stigmatised. It feels good to be part of an ambitious and determined organisation that is working so hard on behalf of families to raise awareness, achieve equality of care for all, and grow its specialist services so that nobody is left to cope alone with such a devastating disease.”
A former journalist, Roisin worked for local, regional and national news titles for more than 20 years before making a career shift to corporate communications. Former roles include Deputy Editor, Greenock Telegraph; Sub Editor, Scottish Mirror; Sub Editor, Daily Record/Sunday Mail; Head of Communications and Public Affairs, Glasgow Caledonian University; and Head of Communications, Mary’s Meals UK. She brings experience of working for, and with, the media, brand development, internal communications, publications, content creation and strategy development.
“It’s an enormous privilege to work closely with young people from families impacted by Huntington’s disease; working with parents to disclose the illness, meeting a young person for the first time, empowering them to attend groups and summer camp, and supporting their decision as a young adult to find out about their own genetic risk. It’s a huge honour to be trusted to be part of their journey each step of the way. Every day I’m inspired by the young people we support and how they face their challenges, and I’m driven to ensure Scotland is the best place to be if you have Huntington’s disease in your family.”
Grant was appointed Youth Service Lead in 2022, having joined the charity in 2011 as the Specialist Youth Advisor for Greater Glasgow and Clyde, Lanarkshire, Forth Valley and Argyll & Bute. During his time with the charity, he has worked closely with a range of stakeholders while leading the development of age-appropriate literature and bespoke Tip Jar digital resources to support the financial wellbeing of children and young people in HD families.
With an MSc and BSc in Psychology, Grant has previously worked with children and young people impacted by childhood sexual abuse, and children who have autism.
“Working for SHA has been one of my greatest professional and personal achievements. I joined in 2003 when there was a handful of staff and we were just beginning to set up services, source funding and build relationships with other professionals. Most people had never even heard of Huntington’s disease never mind have an understanding of how it impacted individuals and families. We’ve come a very long way since then and as a small charity we punch well above our weight. I’m proud of what’s been achieved and that SHA is now considered a ‘world renowned service’. The one thing that has never changed for me is how I feel about working with the families we support – it’s an honour and I feel humbled to be part of their lives.”
Karen joined the charity from a nursing background, primarily in the NHS but also with the private sector. She specialised in urology, gynaecology and palliative care, and for a time was the Urology Case Manager in HCI providing case management, education and training to patients from the United Emirates. Karen then worked for SSL international as a nurse specialist before joining Scottish Huntington’s Association as a HD Specialist in Ayrshire. Promotions to Team Leader followed in 2005, then Service Development Manager for the South West Team in 2008, and Operation’s Manager 2018. In her current role Karen works at the most senior level of the organisation and leads SHA’s client-facing teams – HD Specialists, the Youth Service and the Financial Wellbeing Service.
