Scottish Huntington’s Association (SHA) is a Scottish charity that was established by families living with Huntington’s disease (HD) in the late 1980s. Experiencing directly the dearth of services available to them, the organisation pursued the goal of setting up specialist family support services and this ultimately blossomed into the development of an extensive network of specialist services.
There are currently nine specialist HD services in Scotland; Highland, Grampian, Tayside, Angus, Fife, Lothian, Lanarkshire, Glasgow and Ayrshire. We also have three specialist youth advisors; one covering the North East, based in Aberdeen, and two the South West, based in Glasgow.
SHA also supports a network of family branches which are run by family members for family members and provide information and peer support. The groups also fundraise, are able to help people in practical ways by providing welfare grants and provide fun social opportunities. There are currently groups in Tayside, Fife, Lothian, Forth Valley, Lanarkshire, Aberdeen, Elgin, Glasgow and Ayrshire.
Carolyn Craig, Business Woman
Carolyn was born and brought up in Inverness. Her Mum, Christine, was diagnosed with Huntington’s Disease in 1979 and she grew up 50/50 until getting a negative test for HD in her early 40’s. Her only Brother, Hugh developed the disease and sadly passed away in January 2015. Having been involved with local groups and taking a keen interest in the Sha including attending Family Conferences over the years, Carolyn joined the Board as a Family Member in 2009.
A former Property Manager in a prestigious Edinburgh Legal Firm, Carolyn started up her own business in 1997 providing estate agency services to firms of Solicitor Estate Agents in the Lothians and Fife. As a Director of Cairn Limited, she wrote and delivered Scottish specific Estate Agency qualifications and trained hundreds of people in estate agency modules across Scotland from Inverness to Dumfries. She has been a Fellow of the National Association of Estate Agents since 1991, was a Director in Warwick for two years and served on various committees including Executive, Membership, Education, Professional Development and the National Disciplinary Panel.
Carolyn is happily married, living in Fife with her husband and springer spaniel. She is also Treasurer and past Chair of Fife Kelpies Sub Aqua Club and a Regional Instructor for the Sub Aqua Association.
Gareth Thomas, Consultant Psychiatrist
Gareth graduated from Edinburgh University Medical School in 1984, and trained in Aberdeen and Newcastle before being appointed as Consultant in Old Age Psychiatry in Dunfermline in 1993. He was introduced to the complexities of Huntington’s Disease, and the existence of the Scottish Huntington’s Association, shortly after the SHA Fife Service started in 1995. He became a Board Member in 2003, and in 2004 became one of the first psychiatrists in Scotland to have time specifically allocated to Huntington’s Disease.
He enjoys curling, is married with a family of two, plus a neurotic cat.
Josie Saunders, Head of Corporate Affairs, Scottish Canals
Josie is an experienced communications and reputation management professional with a track record in the public, private and third sectors. Her expertise covers media and corporate communications, brand and reputation development and management, effective integration of marketing and communications with policy innovation and building and maintaining often complex relationships with multiple stakeholder groups.
Having started her career as a news reporter and feature writer on a range of national and regional newspapers, including the Scottish Sun, Scottish Daily Mail, Scotsman, Sunday Mail and Evening Times, Josie has delivered high-level communications and reputation management support to international, national and regional organisations across a diverse range of sectors, from EMAP, First Direct bank and ScottishPower to Gladedale housebuilders, NHS24 and the Scottish Government.
As Head of Corporate Affairs at Scottish Canals, Josie drives marketing and brand development, corporate and consumer communications, online activity, events, stakeholder engagement, community relations and reputation management at a senior level within the business. She has worked with Scottish Huntington’s Association since 2010.
Julia Clark, Consultant Clinical Neuropsychologist
Julia works with adults who suffer from acquired brain damage due to a variety of causes. She uses neuropsychological assessment to guide rehabilitation and therapy.
She gained a PhD in Neuroscience from Birmingham University and later trained as a Clinical Psychologist and Neuropsychologist at Glasgow University. She trained as an Expert Witness with Bond Solon in London and provides medico-legal reports when requested. She is a fully accredited BPS supervisor and offers supervision for candidates working towards the Qualification in Clinical Neuropsychology in Scotland and Northern Ireland. She is secretary of the Membership Services Unit of the Division of Neuropsychology of the BPS.
Julia became interested in the impact of Huntington’s Disease on families after attending a meeting of the Neurological Alliance at the Scottish Parliament during which the work of the Scottish Huntington’s Association was showcased.
She enjoys pottery, reading and spending time with her daughter, son-in law and grandchildren.
Marie joined the SHA Board in 2009 as a family member. Her Dad died of HD when she was 16; she tested positive three years later. Marie is the youngest of four siblings, all HD positive. Marie’s two older sisters, Janet & Kathleen, are in care homes in Fife. She very sadly lost her brother, Hunter three years ago. Her Mum, Rose Heath was on the Board some time ago.
Marie has a PhD in Neuroscience from the University of Edinburgh. She began a career in Regulatory Affairs at the Medicines & Healthcare Regulatory Agency (MHRA), London. She then joined a US-based, global pharmaceutical services provider in Scotland, where she was an Associate Director of Regulatory Affairs. She ran large, multinational clinical trials in many indications. She also managed a team of regulatory professionals across Europe. Marie’s understanding of pharmaceutical development lends itself well to the current HD clinical trial environment.
Marie now lives in Forth Valley and is enjoying time with her family. She loves yoga and being mindful. Since her daughter took up synchronised swimming 4 years ago, she has become heavily involved in their club where she is now a coach. She’s also trained to be an assessor and judge of the sport. The family love cycling and walking together.
Melanie Hill studied Industrial Relations and Marketing at Strathclyde University and has pursued a career in HR thereafter. She is presently HR Director, Organisational Capability for ScottishPower. Melanie joined ScottishPower in 2008 as Senior Organisational Development Consultant and then went on to become Head of Organisational Development before taking up the lead role of Director of Development. Prior to moving to ScottishPower, Melanie held a variety of Senior HR roles across all HR disciplines, having previously worked in Financial Services for 15 years with Standard Life, Prudential and Scottish Amicable. Melanie is currently studying Coaching and Behavioural Change with Henley Business School.
Melanie is married with 2 boys and alongside spending fun times with her family enjoys cooking and swimming. Melanie has recently joined the Board of Scottish Huntington’s Association and is enjoying this new learning opportunity in her life.
“I became aware of HD via my wife around 25 years ago. Her father and sister died of HD and then she was diagnosed and forced an increase in my knowledge and awareness. My wife Sandra died a few years ago. We have one daughter.
I trained as an economist and then have worked in finance as a fund manager for over thirty years. My interests include mountaineering and skiing. I have written an article – ‘HD, a Wider Community’, illustrated below, which gives an explanation of the wide variety of organisations worldwide who have an impact on the search for a cure and care for people affected by HD. Our engagement via SHA allows us to share best practice and keep abreast of developments. It also provides a formal and informal network for research and resource at many levels that would be difficult to achieve at a national level”.