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. Contact the trustees. Dom Hargreaves, MBE. Chair, Board of Trustees "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." Dom became ADSHG chair in April 2022. 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 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. Christine Walters Co-opted Trustee Married with 3 sons, I have been a Director of our business since 1995. I work alongside my husband and our fantastic team at the electronic components business we run, based in South Wales. My son was diagnosed with Addison's disease 5 years ago after a period of feeling very unwell. I joined the ADSHG immediately after the endocrine nurse mentioned the self-help group whilst my son was an inpatient being stabilised on his meds. I needed to know more about his condition. As they say, knowledge is power. The help and support that I received as a Mum was invaluable. What I learn from the forum and at conferences I 'drip-feed' to my son until he is ready to learn about and accept the condition himself. I help at the conferences in Birmingham, Cardiff and Harrogate and always attend the AGM and help where I am needed there. In my previous job, I was a Medical Representative for a pharmaceutical company and so I felt able and confident enough to help on the Addison's stall, speaking to both doctors and nurses. I love to talk!! I am passionate about wanting to tell new Doctors the symptoms of the disease as 4 Doctors missed the symptoms that my son was showing; he is so lucky to be alive. And yet, 3 weeks before he was diagnosed, a 13 year old girl died from undiagnosed Addison's in the same hospital. I am passionate about helping wherever I can with the ADSHG. 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 of patients 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. Thanooshan Selvarajah Co-opted Trustee Thanooshan was diagnosed with Addison’s Disease in 2018, when he was 18 years old. As a part of the small number of young persons with Addison’s Disease, he recognised the importance of advocacy and started a blog shortly after diagnosis. He has contributed to ADSHG through writing blogs, fundraising and more. He was co-opted as a trustee in September 2022, having had a long history with the charity. He is particularly passionate about the issues faced by ethnic minorities and is seeking to raise greater awareness around the diagnosis for those with darker skin tones. As an aspiring solicitor, he is excited to provide his services and unique perspective to the charity. Dr Alessandro Prete Trustee Dr Alessandro Prete completed his training in Endocrinology and Diabetes in Rome, Italy. Since 2018, he is a Diabetes UK Sir George Alberti Research Fellow in the Institute of Metabolism and Systems Research at the University of Birmingham, UK, and an Honorary Consultant Endocrinologist at the Queen Elizabeth Hospital, University Hospitals Birmingham NHS Foundation Trust. His research focuses on functioning adrenal tumours, cortisol excess and novel therapies for adrenal insufficiency, combining clinical trials and experimental medicine studies. Alessandro was elected as a trustee in July 2022. 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 Trustee 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. “ 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. “ Executive Director Vick Smith FRSA 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 Philippa 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. Following her work as Operations Manager throughout the pandemic, Vick became Executive Director in September 2022. Digital Communications and Engagement Manager Philippa Sharman Philippa 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, Philippa 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, Philippa 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 Philippa’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. Due to the vital news coverage, social media communications and support that was required during COVID-19, Philippa has worked at the ADSHG since September 2020. Philippa'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. Philippa'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! Ops Support Assistant Chloe Mezzetti Chloe spent a brief time as an ADSHG trustee and has supported us as a medical conference volunteer. With Chloe works with our fundraisers to ensure they have all the support they need. She also helps Vick with the smooth running of our charity's operations behind the scenes to make sure we're able to do more for members and supporters. You can find out more about Chloe and her Addison's journey within her blog post 'Chloe's Story: From Trustee to Employee'. Patron and Founder Deana Kenward MBE 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. Manage Cookie Preferences