This year marked an incredible milestone for the Addison's Disease Self-Help Group as we celebrated our 40th anniversary. We are deeply grateful to all our members who have supported us throughout the years, making our charity what it is today.

To celebrate, we organised our Addison's Roadshow, with events across the UK in Glasgow, London, Cardiff and Newry. Thank you to our incredible volunteers and Trustees who gave up their time to make this happen!

Our 40th-anniversary theme was 'Stronger Together', and this resonated deeply at each roadshow, where we shared knowledge, offered support and created connections - proving that when we come together, we are truly stronger. Keep scrolling to see all the great photos from the events, and if you attended if you can see yourself!

Below we bring you the highlights from each of our Roadshow locations, the unique discussions and insights along with a summary of our expert medical speakers' talks. Click the location name to be taken straight to that event or keep on reading!

Glasgow

• Dr Jarod Wong: current guidance for managing Addison’s and adrenal insufficiency in Paediatrics

London (available to watch online)

• Clinical Advisory Panel Chair, Professor John Wass, presents on: "Adrenal Insufficiency: Past and Present”
• Aldons Chua RN (Endocrine Nurse Specialist) leads one of our emergency hydrocortisone training sessions
• Julia Anthony MS (SOLUtion Medical) presents: “Research update - one-step injector for adrenal crisis, TwistJECT™"
• Medical Q&A panel session answers your questions. Our thanks to Professor John Wass, Dr Alessandro Prete, Lisa Shepherd RN, Dr Sofia Llahana and ADSHG Chair Dom Hargreaves
• Dr Alessandro Prete: “Adrenal Insufficiency: Looking to the Future”

Watch online

Cardiff 

• Professor Stafford Lightman: "Research update - U-RHYTHM, a wearable device to measure cortisol in the body over 24 hours"

Newry

• Dr Agnieska Pazderska: "Addison’s disease, Past, Present and Future"

Our London event and AGM were filmed, allowing our members to watch back on-demand! Please click the button below to find out more. 

Addison's Roadshow @Home - watch online

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Glasgow: Saturday 6 July

On Saturday 6 July we hosted our first Addison's Roadshow event in Glasgow with over 70 attendees joining us. The day started with time to chat and meet others before we began our presentations on the charity (including our humble beginnings 40 years ago), Dr Wong's presentation and our emergency injection training with Endocrine Nurses Lisa Shepherd RN and Donna Grant RGN.

Attendees were given a live demonstration on how to successfully assemble and inject an emergency hydrocortisone injection – a life-saving skill. They were then given the equipment and were able to practice administering the injection into an orange. This session is always popular and an excellent refresher training opportunity.

Medical Speaker - Dr Jarod Wong

We were delighted to be joined by Senior Clinical Lecturer and Consultant Paediatric Endocrinologist Dr Wong. Within his presentation, he shared the current national guidance both in adult and paediatrics, for managing Addison's and adrenal insufficiency. He highlighted the importance of carrying a steroid emergency card to assist in receiving emergency care. In the case of paediatrics, this is the BSPED Paediatric Steroid Treatment Card for Adrenal Insufficiency  

Children & Young People

Dr Wong is currently looking for participants to take part in his research. His research will be focussed on young people with Addison's and adrenal insufficiency. For more information and to take part, please click the button below!

Research: Families and Young People

Medic Q&A

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. From these discussions, we are keen to highlight the support we bring to those with other health conditions, as well as Addison's or adrenal insufficiency.

We know from our personal experiences the challenges juggling multiple health conditions brings which is why we ensure this support is available for our members.

• Our partnership with The Wren Project offers a free listening support for adults diagnosed with autoimmune disease
• The Rareminds Wellbeing Hub offers information and support to navigate life with a rare condition.
• Read more about the impact emotional stress here on our website
• Our online forum is there for you 24/7, ask a question or join a conversation with other people with Addison's and adrenal insufficiency. Hear their personal experiences and advice.
• Read our Blogs to hear others experiences such as Liam who also has Crohns, and Sarah who also has Type 1 Diabetes and asthma

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London: Saturday 20 July

Our second Addison's Roadshow event in London also included our formal AGM. Attending the event we had around 80 in-person and over 120 online via Zoom! Online, the Zoom chat was buzzing, allowing members who couldn't travel not to miss out, watching all talks from the comfort of their sofas! Whether online or in-person, the day was filled with community spirit and was an excellent opportunity for our members to form new friendships.

We are so thankful to our incredible speaker for giving us their time and expertise! Below are the talks you can watch back on our online forum, or keep reading here to hear our round-up!

• Clinical Advisory Panel Chair, Professor John Wass, presents on: "Adrenal Insufficiency: Past and Present”
• Julia Anthony MS (SOLUtion Medical) presents: “Research update - one-step injector for adrenal crisis, TwistJECT™"
• Medical Q&A panel session answers your questions. Our thanks to Professor John Wass, Dr Alessandro Prete, Lisa Shepherd RN, Dr Sofia Llahana and ADSHG Chair Dom Hargreaves
• Aldons Chua RN (Endocrine Nurse Specialist) leads one of our emergency hydrocortisone training sessions
• Dr Alessandro Prete (University of Birmingham): “Adrenal Insufficiency: Looking to the Future”

On our online forum we include follow-up links to all the questions asked during the fantastic Medical Q&A panel session.

Watch online

Pictured: Medical Speakers - Prof John Wass, Alessandro Prete, Julia Anthony

At this event we gave thanks to our founder, Deana, for her hard work and support for the charity over the years. As a special commemoration, we presented Deana with a folder filled with our first 100 newsletters. We also introduced an annual award in Deana's name – The Deana Kenward Award for Special Contribution to the Charity. This inaugural award was given to Alison, our long-term enquiries email and conferences volunteer for all she has done for the charity over the years. The ADSHG wouldn't be possible without volunteers like Alison, so thank you Alison for all you do!

Emergency Injection Training - Lisa Shepherd and Aldons Chua

Our training sessions involve our endocrine nurses talking through the injection process, giving helpful tips and guidance when in a crisis and then demonstrating the injection. Everyone is then given an orange, needles and syringes, our step by step printout instructions so they can practise themselves! You can watch the session given by Aldons Chua on our online forum.

One attendee who had to inject his wife suggested that watching our online injection training videos were vital. These videos allowed him to provide this life-saving injection.

Visit our emergency injection page

Watch online

40 years of the ADSHG!

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!

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Cardiff: Saturday 3 August

Our Addison’s Roadshow in Cardiff brought together another 85 people from our community, alongside our volunteer team and medical experts, making for a hugely successful event!

It was a packed day with Trustees’ sharingtheir plans for the charity, thanking our fundraisers, our new ADSHG shop and of course copious amounts of 40th Anniversary cake! 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. 

Medical Speaker - Professor Stafford Lightman

What do doctors and people living with Addison's and adrenal insufficiency really want to know when they are trying to improve cortisol replacement therapy? According to Professor Stafford Lightman the most important basic information needed is a knowledge of what the patient’s levels of cortisol are across the full 24 hours. Unless you have this basic information, it is not possible to make any rational decisions as to how to improve hormone replacement regimes.

Stafford's presentation was a perfect blend of Addison’s and adrenal insufficiency background, science, and excitement about his work. Professor Lightman talked us through the data that demonstrated how the pattern – rather than simply the level - of hormone levels across the day was vital for good health and in particular memory and appetite regulation.

He then went on to show how a new device called U-RHYTHM could be simply put on a patient who could then go home or to work and return 24 hours later. The device was then removed and was able to record levels of cortisol every 20 minutes over the full 24 hours. U-RHYTHM has been described as a "world first" and "revolution in hormone understanding". Currently the team have data from over 200 individuals who have used this device, as well as some people with Addison's, Cushing’s disease and hyperaldosteronism. 

There is great variability between people so everyone is very individual and Professor Lightman emphasised that this includes an individual’s response to cortisol replacement. In an ideal world all people with Addison’s and adrenal insufficiency would be able to have 24 hour home monitoring to ensure optimal replacement. Also all new long acting replacement preparations need to be tested over the full 24 hours so that patients and their endocrinologists really understand how they may or may not help improve therapy. The ‘natural’ pattern is also impossible to replicate through treatment with oral steroids, as they bring ‘one hit’ at a time, with a fixed half-life.

Professor Stafford Lightman shares with us:

"I found the day amazingly rewarding. The Addison’s community is such an enthusiastic and appreciative group of people to work with. I enjoyed the opportunity of talking with so many of you and came home feeling enthused to continue to do my best to help improve your treatment outcomes."

Lightman SL, Conway-Campbell BL. Circadian and ultradian rhythms: Clinical implications. J Intern Med. 2024; 296: 121–138.

We have to be realistic about when such diagnostic and treatment systems may become available, but here at the ADSHG we have been supporting this work for many years and will continue to do so. The project is well advanced and bodes well for us all in the future. This work goes alongside Professor Stafford Lightman teams work into Pulsatile Cortisol Infusion Pumps. Both have been published in the Journal of Internal Medicine and you can see their graphical abstracts above. If you'd like to read more about both of these research projects to learn what they mean for you, visit our "Behind the Research" blog articles.

U-RHYTHM - Cortisol Testing  Pulsatile Cortisol Infusion Pumps

Medic Q&A

The last part of the day saw Professor Lightman, Endocrine nurses Lisa and Janet and our Chair, Dom, take questions from the audience. We heard a host of wide-ranging questions. Once again, this important part of our conferences demonstrated how effective it is to connect people, with everyone learning from the session. Stafford’s presentation had been thought provoking and this was reflected in questions about his work, medical research more widely, and how hormone levels are affected by stress, our body clock, other aspects of our lifestyle, and other conditions. To continue these discussions, please visit our online forum.

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Newry: Saturday 10 August

Situated on the banks of the River Clanrye, just over the border into Northern Ireland, and on the route between Dublin and Belfast, the small city of Newry and the Canal Court Hotel, was the backdrop for our 4th and final roadshow. 

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

In addition we had an important and engaging discussion around options for how the ADSHG can best support ROI members in the aftermath of Brexit, led by Trustee Robert, who lives in Ireland himself, so has been carefully looking into this and putting forward different options for members. Rachel Bracken, our longstanding Ireland co-ordinator volunteer, updates as below:

"As you may know by now, due to Brexit, ADSHG being a UK charity can no longer fundraise, lobby or host official charity meetings in the Republic of Ireland. The Pituitary Foundation UK is similarly affected. Therefore I, and a few other members of ADSHG, have joined forces with a few Pituitary Ireland members. We are in the process of setting up API, the Addison's and Pituitary Ireland Support Group. We have very generous support from both ADSHG and Pituitary Foundation charities to do this.

We have first registered API (Addison's and Pituitary Ireland Support Group) as a CLG (company limited by guarantee). Once that step is complete, we can apply to register as an Irish charity. This will take a few months.  We will always have the excellent medical literature from both ADSHG and the Pituitary Foundation, but once we have the Irish charity registered, we can also join with other Irish charities such as Rare Diseases Ireland and Health Research Charities Ireland, which we could not do as a UK charity. So, watch this space! I will be excited to share our progress in the coming months. If you could support us in any way please get in touch on: [email protected]"

Medical Speaker - Dr Agnieska Pazderska

Reminding us how Addison's and the function of the adrenal gland was first discovered in the first half of the 1900s, Dr Pazderska went on to focus on current therapies and the challenges of monitoring treatment in Addison's disease. It was fantastic to understand current hormone replacement options better, their pros and cons in relation to ease of regime, effectiveness at replicating a 'normal' cortisol release, and side effects.  

Attendees also heard a fascinating summary from some 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.

We are so grateful to have access to Agnieszka's expertise and passion, shared through her talk, and via the Q&A panel alongside Mary Joyce (RN), Rachel Bracken (Irish co-ordinator), and Dom Hargreaves, (Chair of Trustees).  Between them, they responded to a host of queries around co-morbidities, medication regimes and clinical trials.​

Robert and Marks's Fundraising Challenge

Our Irish Trustee Robert updated members on his fundraising challenge - to cycle 450km over five days, from Verona to Venice, with his friend Mark. Robert's motivation is deeply personal, as his daughter, Victoria, was diagnosed with Addison's as a teenager. He is determined to help raise vital awareness and funds for our charity, as well as supporting us as a Trustee. Thank you Robert! If you'd like to support you can still donate, please click here.