The ADSHG team consists of the trustees, volunteers and contract staff. All the day-to-day work and projects the charity undertakes is governed and directed by the trustees.
Anne Benjamin: Forum moderator
I was lucky to hear about the ADSHG just after I was diagnosed in 1997 and I met Deana and others. This was invaluable to me and my family and I hope to be able to help others in the same way that I have been supported.
Rachel Bracken: Addison's Ireland co-ordinator
I joined the ADSHG a few days after being diagnosed with Addisons in September 2011 and immediately I felt tremendous support and formed great friendships with other members. I attended the Irish AGM in spring 2012 and offered to help in any way possible. Together with another member, who worked in the Irish ambulance service and whose son was newly diagnosed with Addisons, I got an adrenal crisis ambulance protocol implemented throughout the republic of Ireland by 2015. In early 2018 the previous Irish coordinator stepped down and I gladly took up challenge and we have lots of exciting projects on the go! I really love helping and giving something back to the charity that has helped me so much.
Frances Hambidge: Forum moderator
I've had Addison's for nine years and type 1 diabetes for two years. I found the ADSHG forum a lifeline when I was diagnosed and nobody I knew had ever heard of Addison's. I horse ride, garden and enjoy being outside when I'm not working as a librarian.
Deana Kenward: Founder & Patron
Deana founded the ADSHG in 1984 and is now Patron of the charity. You can find out more about Deana's story and how she came to start the charity in our personal experience section.
Dr Mary-Anne Kedda: Newsletter Editor
Mary-Anne has a PhD in human molecular genetics and a Master of Public Health, with over 20 years of experience in laboratory-based genetics research and clinical research of complex diseases. She has worked and published internationally and is currently based in Australia. Mary-Anne is passionate about clinical research and has a family member in the UK with Addison's Disease, who has always felt supported by the ADSHG. She is delighted to be joining the ADSHG Newsletter Design & Editing Team, in the role of Editor, and looks forward to making a contribution to the organisation.
Alison Mainwaring: Nursing awareness co-ordinator
I was diagnosed in 2009. I am married and live in Guildford and have two sons at Durham University. In my role as nursing awareness co-ordinator, I write, and help other volunteers to write, to senior members of staff at universities who teach the Nursing Degree. The letters explain what Addison's disease is and highlight the plight of the steroid dependent patient, either as an inpatient or an outpatient, to raise awareness of steroid dependence and the importance of knowing what to do in the event of a crisis, but also crisis prevention in all its forms. This is part of a drive to raise awareness among nursing staff and particularly triage nurses who may inadvertently through lack of knowledge of Addison's disease prevent a steroid dependent patient from seeing a doctor in a timely manner or failing to supply medication in a timely manner too.
Neil McClements: Chief Executive
Neil is an award-winning senior executive with extensive stakeholder, client-facing project/programme management skills. He is an advisor to the voluntary / healthcare sector with a particular interest in advising small charities in conjunction with the Foundation for Social Improvement and serving as trustee/board member for Haemochromatosis UK and the British Liver Trust. Following a career in software engineering & machine learning, Neil has been been retained by NHS England as an advisor to the national Primary Care Digital Transformation Clinical Advisory Group.
I was diagnosed with Addison’s disease and hypothyroidism in 1987. I learnt about the ADSHG from a magazine article that my mother passed on to me and joined the group in 1996. I became a trustee in 2004 but stood down in 2010 in order to take on the role of part-time contractor looking after the ADSHG membership database and our attendance at Society for Endocrinology conferences. I feel that the work of the Group is essential to everyone with Addison’s and their families because it is a self help group that really does help and, by strengthening our close links with endocrine specialists and the medical profession, the ADSHG is now internationally recognised and respected.
Pippa Sharman: Twitter co-ordinator
I have been tweeting away for the ADSHG since I set up the charity's Twitter account in March 2014. I was diagnosed with Addison's at 15 years old, and wanted to help publicise the ADSHG and connect with others, as I benefited hugely from the charity's resources and online forum myself. Please follow us on @AddisonsUK for our bite-sized news on fundraising, campaigns, the latest medical publications and products to support people with Addison's.
Vick Smith: Facebook co-ordinator
I first encountered the ADSHG in 2006 when I was diagnosed with Addison's. I was delighted to join the team to help the ADSHG with its social media strategy and pay forward all that help and support I'd received over the years. As part of the communications team I've enjoyed celebrating the efforts of other people with Addison's as they take on amazing feats like the London Marathon and even the Ice Bucket challenge. You can see Pippa and I at work on Facebook and Twitter.
Julie Watson: Ambulance Awareness co-ordinator
I was diagnosed in 2002 and joined the ADSHG shortly afterwards. Whilst working I helped arrange some of the translations of the emergency instructions into other languages for travel overseas. I now live on the Isle of Wight and I am ambulance awareness co-ordinator for the Addison's group.