40 years ago this charity didn’t even exist. In Deana's (our Founder) initial letter printed in the TV Times when she was diagnosed, she wrote:
I would so much like to find out more about this disease so that I might help others affected, but cannot find either book nor leaflet, society nor foundation.”
Fast forward 40 years, and here we are today, not just helping one another but talking about working internationally, with the NHS, about improved care, treatment and so much more! Born out of sheer necessity, it’s amazing the resilience, expertise and skills our community has shown to get the ADSHG to where it is today.
Noel (our longstanding volunteer who has Addison's himself) and Prof John Wass are pictured here cutting our 40th birthday cake, kindly made my Anna, Noel's wife.
Anna also made gluten-free cupcakes so everyone could join in! Thank you so much Anna, for your kindness and excellent baking!
Our charity is people-powered! Thank you to everyone who has supported us in achieving so much for so many. It is exciting to think where we could be in another 40-years time!
To celebrate our 40-year anniversary, we were excited to host 4 member events across the UK. Our anniversary theme 'Stronger Together' resonated deeply in Glasgow, London, Cardiff and Newry, where we shared knowledge, offered support and created connections.
We share the highlights of our events:
Glasgow: Sat 6 July
Over 70 attendees joined us to hear about our humble beginnings and a presentation by Dr Jarod Wong: Current guidance for managing Addison’s and adrenal insufficiency in Paediatrics.
We encouraged attendees to actively participate in our Q&A session, and from this, we had very exciting discussions about various topics, including daily management, Sick Day Rules, ongoing research and support.
London: Saturday 20 July
You can read about our London Roadshow and 2024 AGM from the 'Our Strategy' page
Cardiff, Saturday 3 August
We were thrilled to bring together another 85 people from our community, alongside our volunteer team. All members also received instruction and practice on giving the emergency injection, were reminded by Professor Lightman of the science behind Addison’s, and learned about prospects for better treatment in the future.
More information about U-RHYTHM:
U-RHYTHM 2021 and 2023: Behind the Research
U-RHYTHM receives £20k funding boost from ADSHG
Newry: Saturday 10 August
Newry's agenda followed a now familiar format with emergency injection training, expert presentation and Q&A panel. Whilst many of the 60 attendees had been diagnosed with AD or adrenal insufficiency during the last 5 years, it was incredible to have the continued support and experience of some 'expert patients' who have been living with their condition for over 20 years.
Ireland Charity update
We had an important and engaging discussion around options for how the ADSHG can best support ROI members in the aftermath of Brexit.
Addison's and other forms of adrenal insufficiency Patient Support in the Republic of Ireland
Dr Agnieska Pazderska took us through from the history of the discovery of Addison's to recent patient studies where some adrenal function recovery has been seen to occur in response to use of synthetic ACTH (adrenocorticotrophic hormone), as well as a hearing about cell replacement strategies that are being explored using stem cells.
Thank you for joining us on our special 40th anniversary year, and for your continued membership and support.