Our History

The response to Deana’s letter was better than she could have hoped for when the postman delivered over a hundred letters from people who also lived with Addison’s.

She answered every letter by hand, asking if they would like to participate in a support group. Fifty people chose to join, and the Addison's Disease Self-Help Group was born. Deana carried on doing everything in pen and ink at her dining room table until Christmas, when her Mum bought her a typewriter. Her lifetime friend, Lynda Harris, was a Lioness (a female member of the charitable Lions Club) and, the following year, Lynda’s branch of the Lions Club presented Deana with a word processor. In April 1992 Deana posted out the first ADSHG newsletter after obtaining the assistance of one of the leading adrenal specialists in the UK, Professor Mike Besser, to answer medical questions in the newsletters.

In 2001 Nick Willson was the first member to offer help and, over the coming years, his invaluable IT skills would prove pivotal in establishing the group’s website, forum and online presence. Another early member, Alan Lack, designed the group’s first logo with clasped hands for their headed notepaper. The logo went on to be developed to the one you see now, based on the shape of an adrenal gland.

Deana organised many meetings, initially in her home town of Guildford and then nationwide, where people with Addison’s, their friends and families could get together to share experiences. These were often augmented with the input of experienced endocrinologists and endocrine nurses and, in 2003, the Addison’s Clinical Advisory Panel, led by Professor John Wass, was formed.

Katherine went on to write and contribute to innumerable invaluable patient information leaflets that became the template for all ADSHG publications. She inaugurated the first ADSHG Annual General Meeting & Medical Lecture in London in 2002, an institution that has continued for twenty years.

She was elected Chair in 2004 and remained in that post until 2018. She forged links with the Society for Endocrinology(SfE), and the ADSHG stall became a recognised feature at SfE events up and down the country and in Europe too. Katherine worked indefatigably for the furtherance of the ADSHG and her propagation of the Emergency Injection Kit and advancement of the steroid alert card has been, quite literally, life-saving.

The ADSHG was awarded charitable status in 2004.

In 2018, the charity appointed permanent staff, having previously been run entirely by volunteers, most of whom have Addison’s themselves. In 2019, with the assent of the Charity Commission, the ADSHG became a Charitable Incorporated Organisation (UK registered non-profit).

Inspired by Deana's hard work and dedication, the Addison’s Disease Self Help Group now has over 2,100 members and 30,000 social media followers worldwide.

The charity has continued from strength to strength, ceaselessly seeking to expand the aid and information we can provide to people with Addison's and those who support them. 

In 2012, Deana Kenward was awarded an MBE (Member of the Order of the British Empire) in recognition of her outstanding contribution to the charity, the Addison’s community and her exceptional example to others.