The original volunteer: Patron & Founder, Deana Kenward
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.
Alison Mainwaring, Enquiries
Diagnosed with Addison’s in 2009 after her GP picked up on an 'out of character' mention of fatigue, Alison was advised by her consultant to join ADSHG. There she found accurate, straightforward advice and a ready-made community of supportive, experienced members.
Soon after joining, Alison started to volunteer for the charity in working groups, at conferences and managing the Enquiries email inbox. She is also a panel member on our Paramedic CPD Training webinars.
Alison brings her warmth, empathy, and her lived experiences to her roles and is a much-valued team member.
ADSHG Clinical Advisory Panel
The Addison's Clinical Advisory Panel (CAP) is a group of healthcare professionals with a specialist interest and expertise in adrenal medicine and endocrinology. We are fortunate to have representation from endocrinology professors, consultants, a GP, nurses, a pharmacist and a dentist, helping to give us access to a wide range of skills.
They advise the ADSHG on its clinical guidelines, write medical commentaries and collaborate on, co-author or review our publications. They allow us to present to you, trusted and up-to-date information that you can rely on.
The Clinical Advisory Panel is led by Professor John Wass of the Churchill Hospital, Oxford (pictured).
Trustee Board
The charity is governed by and receives strategic direction from an experienced team of volunteer trustees in accordance with our constitution. It is important that the board has knowledge and lived experience of Addison's and other types of adrenal insufficiency, and as such, all of the trustees on our board either work in adrenal medicine, have lived-experience of Addison's or adrenal insufficiency, or have supported a member in their family with the condition.
We are extremely grateful to our trustees, who are engaged and passionate, and bring their experiences to the table to support the work of the charity.
The trustee board is chaired by Dominic Hargreaves, MBE, who was diagnosed with Addison's disease in 2004.
Become a volunteer for the ADSHG
If you have time, skills and passion to share, get in touch to find out how you can get involved in the ADSHG - we'd love to hear from you!