ACC Support UK

09/10/2026

Our next Great South runner is Katie.

Katie said 'In July 2019, I lost my beautiful mum to Adrenocortical Carcinoma (ACC). This cancer is so rare that it affects just one in a million people. My mum truly was one in a million in every sense of the word, and I have decided to lace up my trainers once again to run 10 miles in her memory.
On Sunday 18th October 2026, I will be running the Great South Run. I’ll be thinking of her every step of the way, and I know that every penny raised provides a lifeline to the ACC community.
I’ll do my best to make her proud and raise as much as I can for such an incredible charity.'

If you would like to donate to Katie here is a link to her fundraising page.
https://www.totalgiving.co.uk/mypage/mum-miles-amend

Good luck and thank you Katie!
🏃‍♀️👟🎽🤞

08/10/2026

AMEND/ACC Support has 4 runners taking part in the Great South Run which is being held on Sunday 18th October. We would like to introduce you to a few of our runners this week.

First up with have Martin. Martin explained that he is undertaking the 10-mile challenge for his stepson Neil who was diagnosed with a very rare Adrenal Cancer (ACC) in January 2023 (aged 31). This has changed Neils life dramatically. He has gone through chemotherapy treatment and operations. He continues to show courage and resilience living with this disease.

If you would like to donate to Martin and hear a little bit more about why he is running here is a link to his fundraising page.
https://www.totalgiving.co.uk/mypage/martin-gsrun2026-fundraising

Good luck and thank you Martin!
🏃‍♀️👟🎽🤞

07/10/2026

📣 New survey exploring people's experiences when trying to access professional mental health support

Charities like AMEND are filling the gaps providing mental health support for people with rare cancer like ACC. So, our Counselling Service provider, Rareminds, wants to find out more about people's experiences if you have tried to access mental health support through the NHS. Please take part in this survey by 30 November to help them (and us) advocate for the need for rare disease mental health support.

📲 https://www.smartsurvey.co.uk/t/RMSurvey2026/

23/09/2026

📣 NEWLY AVAILABLE!

We are pleased to be able to bring you our recently recorded interview with the UK lead researcher for the CLARITY clinical trial, Professor Debashis Sarker. Prof Sarker explains all about the trial itself, the treatment, exclusion criteria, and how someone with adrenocortical cancer (ACC) can access the trial.

Watch on our YouTube Channel: 📲https://youtu.be/NvF5ko91k-s

20/08/2026

Good news – despite being told we had no London marathon places for 2027 we have just been allocated 3 places in next year's Saturday London marathon. This is being held on Saturday 24th April 2027.

The London Marathon is an iconic 26.2 mile course set around the river Thames. Over 45,000 runners will tackle the closed road course starting in Greenwich and finishing on The Mall taking in iconic sights such as the Cutty Sark, Tower Bridge, Big Ben, and Buckingham Palace along the way.

AMEND/ACC Support has 3 places available in the race. The fundraising target is a minimum of £2000 (which has always been exceeded). If you are interested in one of AMEND’s spaces, please send your expression of interest, why you want to run and fundraise for AMEND/ACC Support and a realistic estimate of the total funds you will raise to Helen in the office no later than 18th September [email protected]

🏃‍♂️🏃‍➡️🎽🥈

19/08/2026

Calling all ACC members! The next online peer support meeting is being held on Thursday 3rd September from 7-9pm.

Join our volunteers Jennie and Paul on Zoom for 2 hours of informal chat and meet others in similar circumstances.

These meetings are very informal and supportive. Anyone affected by ACC can attend. Patients, family, carers, friends – all are welcome.

Don't forget to book your place

https://accsupport.org.uk/how-we-help/free-patient-events/acc-peer-support-meetings/

It's good to talk!

05/08/2026

Amelia Ternan is bravely doing an abseil down the Spinnaker Tower in Portsmouth on August 16th in memory of her husband Marvin who sadly died earlier this year from ACC. She is undertaking the challenge on what would have been their 8th wedding anniversary.

If anyone would like to sponsor Amelia in her endeavour and to read more about their story you can do so here. https://www.totalgiving.co.uk/mypage/for_marvin

The fundraising Amelia and her family have done so far has been phenomenal and we are enormously grateful to them. Huge thanks to Amelia for doing this to support the work of AMEND and ACC Support in memory of Marvin.

06/07/2026

📣 Cancer Research UK launches a new Phase 2 clinical trial for people with advanced adrenocortical carcinoma. The study will test the effectiveness and safety of Cytovation’s synthetic peptide therapy, CY-101 (getacatetide). Three centres in England will be participating in the trial.

For more information, visit our website News section:

📲 https://accsupport.org.uk/new-phase-ii-clinical-trial-in-acc/

19/05/2026

Our ACC community have their own morning Q&A session. Book by Friday!
📲 https://www.amend.org.uk/patients/amend-support-services/events/national-events/2026-annual-patient-information-day/.

📣 LAST CHANCE TO BOOK! DEADLINE 22 MAY!

This year's patient information event is in collaboration with Neuroendocrine Cancer UK on Saturday 6th June in Sheffield. We are almost at max capacity and so if you don't want to miss your chance to come along, please book by midnight on Friday 22nd May.

The programme and how to book are on our website:
📲 https://www.amend.org.uk/patients/amend-support-services/events/national-events/2026-annual-patient-information-day/

24/04/2026

🙏 Thank you for joining us this World Hormone Day. We hope you have learned something and that you can use some or all of the recommendations to improve your hormone health.

Don't forget to talk to your doctor if you experience any of the symptoms listed during the campaign.

This World Hormone Day, be hormone aware!

📲 https://www.ese-hormones.org/what-we-do/outreach/world-hormone-day/