Dominic Hargreaves, Chair 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 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! My diagnosis with this chronic illness led to me being effectively discharged from 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.
I have been a Trustee with the Charity since 2019, and Chairman since April 2022. The Charity is very important to me in that it enabled me to recover my confidence to live my life to the full, after diagnosis. This was through the web forum, general meetings, Newsletters and informal gatherings of people with Addison's. I enjoy the opportunity to put back into the organisation, and work with a similarly motivated set of Trustees and staff. Even now, 21 years after diagnosis, I learn every time I meet other Addison’s patients about my day-to-day and emergency management of this rare condition.
I am also enjoying the opportunity to work with some of the brightest minds in the world on Addison’s Disease regularly and shape the future of research from a patient’s perspective.
Stuart Pinkerton, Treasurer
I am a Dental Surgeon based in Oxfordshire, where I have practised for the bulk of my professional career. I have two boys, who are both based in London.
In my career, patients with Adrenal insufficiency were rare, but if they attended for treatment, proper assessment was required to determine appropriate treatment and care. We were more likely to see patients on short/medium-term corticosteroids. I have only had two patients with Addison's disease. So, although Dentists are trained in managing patients with adrenal insufficiency, it was unlikely to be an issue within general dental practice.
In 2010, one of my family members was diagnosed with Addison's. The diagnosis was slow, and Addison's disease was never included in the differential diagnosis. From the day of diagnosis forward, it was a long, hard uphill trip to stability and a normal life. For me, the lack of information on the NHS website was depressing. It was minimal and negative. Our consultant advised me to seek out the ADSHG; I can honestly say that it transformed our lives. The depth of information, support and positive stories made us realise that it was treatable and that life could be normal.
I attended my first AGM in 2011 and found it a great help. However, I felt I could do more. As my boys left school, I felt I was able to give time to the Charity. In 2018 I became a trustee and in 2019, the Honorary Treasurer. The Charity has grown and has become an important part of the adrenal insufficiency community. I attend quarterly trustee and Finance committee meetings and Dom and I join a weekly Ops meeting. Sometimes it feels like a full-time job, but as I see what the Charity does, I have no regrets. I'm extremely proud of the Charity, and I believe we can do so much more. Our team: Cathy, Phillipa, Chloe, Trustees, Noel, Alison and all volunteers are a joy to work with.
Christine Walters
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
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 is currently lead Advanced Nurse Practitioner at HSG, now part of University Hospitals Birmingham NHS Foundation Trust.
Within this role, she caseload 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 has been an active member of the Society for Endocrinology (SfE) Nurse Committee since 2007, including as 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.
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 making a difference as an elected trustee. “
Tom Barnes
Tom is a Civil Servant in a central government department and brings experience leading teams across a range of health and complex regulatory policy areas.
Tom says “the Addisons Disease Self Help Group provided me with invaluable support when I had a temporary form of adrenal insufficiency a few years ago. I’m pleased to join the ADSHG as a trustee, and look forward to working with the staff and volunteers here to support others with Addison’s disease & adrenal insuffiency and their families”
Tom hopes to bring his skills in policy, strategy and cross-sector working to support the work at the ADSHG.
Martin Hendry
Martin Hendry is from Scotland and lives with his wife Cheryl and two children, Ava & Noah, in Glasgow.
He was diagnosed with Addison's Disease in 2021 following illness and then an undiagnosed adrenal crisis. Adapting to life with long-term chronic illness, whilst trying to raise a family and work full-time, has been a big challenge. ADSHG was a great resource for support and helped him adjust to life with Addison’s.
He says, “ADSHG has been a massive help to me. Now I want to try and help others who are going through a similar journey. As a new member of the board of trustees and our only Scottish representative, I want to promote the great work of this charity and help support our Scottish members.”
Martin currently works as a chartered financial planner and has worked in financial services for over 13 years. Before this, he worked as a private sector economist. He hopes to bring some of the skills from his 20-year career and use them to benefit the ADSHG. He has particular experience in managing financials, project management and stakeholder engagement, all of which should be in handy in the role of trustee!
Katie Harris
Originally from Ireland, although now living in Brazil, Katie was diagnosed with Addison's Disease after a sudden adrenal crisis in 2021 during her nursing career.
"Adjusting to this new reality as a young adult was challenging for me and the Addison's Disease Self-Help Group was my anchor during that time. It really helped me to feel educated, reassured and in touch with others so I didn’t feel as isolated. Now, as a new member of the board of trustees, since 2024, I’m excited to give back to this incredible community! "
I love to do meditation, yoga, and breathwork—practices that have become pillars in my own journey after diagnosis. I also love hiking in nature, cooking and travelling! I am recently engaged to my fiancé and excited to plan the future together!
My years as a nurse and three years in social media marketing with my own business has given me varied and very relevant experiences which I hope to use as a trustee member to support the charity.
I am passionate about showing people that this diagnosis doesn’t have to limit your dreams. Whether you want to travel, start a business, or live your life to your full potential, you can achieve your goals with the right support, mindset and preparation!
Benjamin Ducaseau
I am a Paediatric Nurse based in Aberdeen, and my decision to pursue nursing was shaped by my own diagnosis of Addison’s disease as a teenager.
With first-hand experience of the challenges this condition can bring, I am committed to supporting others through both my professional role and personal perspective. Through the ADSHG, I hope to contribute to improving understanding, management, and quality of life for those affected.
Ryan Richardson
I am an Associate Director of Business Operations with broad experience across strategy, planning, legal and compliance, IT, data and digital, and internal audit. I began my career as an Architect before transitioning into project management and operational leadership roles. For the past 11 years, I have worked at EngineeringUK (The Engineering and Technology Board), and before that I held roles at the Stroke Association, CRASH (The Construction Industry’s Charity), and within the construction sector. I am also a Trustee of another charity focusing on the environment and supporting those in need.
I was diagnosed with Addison's disease in 2018 in 'crisis' in St George's Hospital, Tooting, after two years of feeling unwell. It then took me a few years to really start to feel like myself again. The charity was a lifeline for me during this time, and I really wanted to become involved to give back.
I am delighted to be a Trustee of this fantastic organisation, and I look forward to supporting wherever I can in the future.
I am from Northern Ireland originally, but have been in London for the past 14 years, where I live in Richmond with my partner Alex.
Staff Team
Volunteer Team
Deana Kenward, Founder
The ADSHG was founded in 1984 by Deana Kenward on her dining room table, following her diagnosis of Addison's Disease.
She arranged member meetings, initially local to where she lived, but she soon took these nationally and then internationally as people from across the globe sought information and support.
Over the following years, the organisation has grown to over 2300 members, and is now an internationally recognised patient support and advocacy group with a flourishing, engaged adrenal insufficiency community.
Deana was awarded an MBE in 2012 for her work for the charity.