About us Our team Our Team Our charity is governed by a team of volunteer trustees in accordance with our constitution and run day-to-day by a Operations Manager, supported by our wonderful community of volunteers. Board of Trustees The charity has 10 trustees with a Chair, Vice-Chair, Treasurer & Deputy Treasurer roles. The trustees may be contacted by email at [email protected] Andrew Glass, OBE. Chair of Board of Trustees Originally from Cheshire, Andrew Glass has spent most of his adult life living overseas. Andrew is currently Director of the British Council in Thailand and leads its work across South East Asia. He has also worked for the British Council in Spain, Italy, Slovenia, Germany, UK, Serbia and Kuwait. His first degree was in German and Politics and he followed this up with an MA in Teaching English and a Diploma in Management. Andrew was awarded an OBE in the March 2012 Honours, list for his work in cultural relations. He was diagnosed with Addison’s Disease in 2001 after a long period of illness. He first contributed to the group as a writer for the Newsletter where he shared his experiences of living with Addison’s Disease in far-flung places and became a trustee in 2014. He became Chair in June 2018 during his second term as a trustee. Andrew can be contacted via email : [email protected] Stuart Pinkerton. Honorary Treasurer Stuart has a family member who was diagnosed with Addison’s in 2010 and joined ADSHG at that time. He found the ADSHG invaluable for advice and support, especially in the first years. He has been a Dental Surgeon for 35 years working in Scotland and in Australia before settling in Oxford. Since 1990, he has run a successful Dental Practice in Oxfordshire. For 10 years he was involved in his son’s football team being manager and treasurer. He was also ran their website. One of his most important tasks was to raise sponsorship which proved successful in keeping the yearly subscriptions affordable for the boys and their families. For a couple of seasons the team supported the Oxford Children’s Hospital by having their logo on their shirts. Rachel Bracken. Trustee & Addison's Ireland Coordinator Rachel joined the ADSHG a few days after being diagnosed with Addisons in September 2011 and immediately felt tremendous support and formed great friendships with other members. She 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 Addison's, 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 Rachel gladly took up challenge and we have lots of exciting projects on the go! She really loves helping and giving something back to the charity that has helped her family so much. Dom Hargreaves, MBE. Trustee "I was diagnosed with Addison’s Disease in 2004, after a three year battle with a variety of “illnesses” – all whilst operating in Army roles in remote, hostile and austere areas of the world, with little continuity of medical care. A local British GP observed that my medical file was very thick and her feeling was that the doctors were missing something. She took decisive action which has ultimately saved my life, what a relief! My diagnosis with this chronic illness led to my leaving the military after 23 years, in pursuit of a new career. Since my diagnosis I have managed my health actively and that has allowed me to pursue a new career in business and engineering – still in remote, austere places but in generally less hostile environments. I am volunteering to become a trustee of the Addison’s Disease Self Help Group, as the charity allowed me to recover the confidence to live my life to the full, after diagnosis. This was through the web forum, general meetings and informal gatherings of Addison’s sufferers. I feel that it is now time for me to put back into the organisation – as both a sufferer and a businessman. In addition as a father of three children, I am keen to shape the Group’s future medical research. I’d like to focus this research not only on living with the illness and its treatment, but preventative pre-diagnosis measures for this and other endocrine conditions." Lisa Shepherd, RN (Adult), MSc, BSc (Hons), Dip H.E, NMP. Trustee Endocrinology Advanced Nurse Practitioner, University Hospitals Birmingham NHS Foundation Trust. HEE/NIHR Clinical Doctoral Research Fellow, University of Birmingham. Lisa has worked in endocrinology since 1999, and currently is lead Advanced Nurse Practitioner at HSG, now part of University Hospitals Birmingham NHS Foundation Trust. Within this role she case load manages patients with endocrine disorders, running nurse led clinics and supporting Consultant and other multidisciplinary clinics. This includes diagnosis and performing dynamic function tests, treatment, management and education of patients with long term, highly complex needs. Her area of interest is adrenal insufficiency and the support and management ofpatients with this condition. Her research has looked at the knowledge and experience of patients with Addison ’s disease and this work is being further developed during her PhD. She is also an active member of the Society for Endocrinology (SfE) Nurse Committee since 2007, including Chair, and an executive board member of the Federation of International Nurses in Endocrinology (F.I.N.E.). She is a member of the ADSHG and is passionate about improving the care of patients with Addison’s disease, working with patients their relatives and healthcare professionals to achieve this. Dr Helen Simpson, FRCP, PhD. Trustee I have a broad clinical experience within endocrinology, with particular interest in late effects, young adult/transition endocrinology, neuroendocrine tumours and inherited endocrine tumour syndromes, Turner Syndrome, DSD and pituitary disease. I am currently focusing on late effects and transition services, and patient safety, in particular for adrenal insufficiency. I am an active member of the Society for Endocrinology and Editor of The Endocrinologist. I am also a member of the RCP Patient Safety Committee and part of the National Medicine Safety Joint Working Group. I am currently working with RCP, SfE and NHSE&I to launch a new Emergency Steroid Card. I am excited to have the opportunity to support members of ADSHG and I look forward to working with the team. Dr Steve Kell, OBE BMed Sci BM BS MRCGP. Trustee Steve has been a GP for 20 years and is a Managing Partner at Larwood Health Partnership in Worksop. He was awarded an OBE in 2014, for services to primary care. “I have also been a GP commissioner, serving as Bassetlaw CCG Chair and Co-Chair of NHS Clinical Commissioners. I have recently been a Non-Executive Director at Primary Health Properties PLC, and I am a member of the Governing Body of Primary Care Commissioning CIC. I was diagnosed with Addison’s Disease in 2017. I continue to work as a full-time GP and I look forward to working with the board of ADSHG for the benefit of all members and patients. “ Robert McClements. Robert is a career banking professional who has successfully led teams in that complex environment. “I have worked in challenging corporate situations where leadership and organisational skills have been paramount. As a member of a bank’s senior leadership team, I link the bank's Board and key staff - always with a view to improving both the business and customer service. I am very keen on this opportunity to use these corporate skills and my experience to benefit ADSHG at board level. The organisation is close to my heart as my daughter is affected by Addison's Disease and so I know how important the charity's information and support services are to both member patients and the medical profession. I look forward to being able to make a difference as an elected trustee. “ Tag McEntegart. Trustee Tag is a powerful communicator and innovative arts and science research and development professional, with nearly 30 years worldwide management and leadership experience, especially valued for her field work in culturally challenging and conflict-sensitive contexts. “I have worked with people at all levels of power and powerlessness – from Government Minsters to kindergarteners. I am a well- respected manager, facilitator, teacher, trainer and team-builder with wide and deep experience of strategy and policy planning and implementation in several development sectors. I worked for the Samaritans for 10 years as a volunteer, trainer and leader and I was previously a trustee of the Addison’s Disease Self Help Group from 2004 to 2014. I am also an accredited humanist celebrant, conducting funerals, weddings, civil partnerships and namings." Phillip Kaye. Trustee Phillip is a solicitor who runs a legal practice in Hertfordshire. He was co-opted during 2019 and has been formally elected at the AGM for a three-year term. “I have been diagnosed with adrenal insufficiency for about two years now and so I am very pleased to be a member of the charity. I am a semi-retired solicitor in private practise and last year I was co-opted as a Trustee for my legal experience. I will be delighted to continue providing legal expertise to the charity as well as assisting more broadly to help the organisation fulfil its objectives. “ Operations Manager Vick Smith. Vick was diagnosed with Addisons and Pernicious Anaemia in 2006 (Type 1 Diabetes followed in 2019) and thanks to the ADSHG website she was able, straightaway to explore what this might mean and chat online to other people with Addison's. Her fondness for the ADSHG began there and it has been her health guardian ever since. With a background in digital roles in banking, Vick encouraged the ADSHG to try to reach out on social media back in 2014. Working with Pippa she's enjoyed posting about the efforts of #TeamAddisons who take on so many challenges and also making sure people with Addison's can quickly find the information and support they need through Facebook. Since 2018 Vick has been the Norwich Social Meeting organiser and since January 2020 our Operations Manager. Digital Communications and Engagement Officer Pippa Sharman Pippa was diagnosed with Addison’s and underactive thyroid when she was 15 years old. The ADSHG website guided her through her school and university years. As further autoimmune health conditions followed, Pippa benefited hugely from the charity’s resources, learning first hand the knowledge and support needed to manage multiple health conditions at a young age. Wanting to further strengthen the ADSHG’s online presence to reach more young people, Pippa began volunteering for the ADSHG in 2014, when she set up and managed the Addison’s Twitter account @AddisonsUK. Seeing people with Addison’s alongside medics, sharing news and opinions, engaging and learning, inspired Pippa’s passion to reach and engage with the Addison’s community. She set up the ADSHG Instagram account in 2020 managing the day-to-day of all the social media accounts with Vick as a volunteer whilst attending fundraising and endocrine events. Following the vital news coverage and support that was required of the ADSHG during COVID-19, Pippa has worked as the Digital Communication and Engagement Officer since September 2020. Pippa’s interest in research has led her to participating in NHS research trials to further medical knowledge into Addison’s as well as being in guidance groups for researchers, helping to make sure research aims align with the lived experience of people with Addison's and adrenal insufficiency. Pippa's highlights of working for the ADSHG so far include the charity's "Think Addison's" article which featured in The Guardian newspaper. When her head isn’t stuck in a book or computer, she can be found out enjoying long walks with her dog! Patron and Founder Deana Kenward The Addison's Disease Self-Help Group was founded in 1984 by Deana Kenward on her dining room table, following her diagnosis of Addison's Disease. Over the following years, the organisation has grown to almost 1,800 members, an internationally recognised patient support and advocacy group with a flourishing, engaged adrenal insufficiency community. Read Deana's story. Clinical Advisory Panel Our Clinical Advisors Our Charitable Constitution Our charity is a Charitable Incorporated Organisation (CIO) regulated by the Charity Commission. The charity is run in accordance with our constitution for the benefit of people affected by Addison's Disease in the United Kingdom & Republic of Ireland.