Our Events .
Our 2020 networking events will be held virtually and then in Bristol and Belfast (hopefully!)..
We are hosting three 'gatherings' in 2020. The first on Saturday May 2nd was a very successful first virtual meeting (see below for more details). We are hoping to have the following Sat 15th August and Sat 31st October meetings in person, but realise this might not be possible. If we cannot meet in person we will be hosting a virtual meeting and will provide an update on the plan for both, in June.
The meetings are a few hours long (for virtual meetings) or all day events (for in person meetings), held at the weekend so as many of you can come as possible. They are completely free to attend and we have limited travel and accommodation bursaries available for attendees, if needed.
The events are for those with Adenoid Cystic Carcinoma, and other salivary gland cancers, their family, friends and supporters, as well as clinicians and researchers working in this area.
The day starts with a support session where people can share experiences and discuss with one another. After lunch we have informative presentations on anything from the latest research to new treatments, from clinicians actively treating and researching into these cancers. We prove you with lunch and refreshments throughout the day.
To get regular updates about this and other events, join our network, follow us on Facebook or Twitter, or watch this space for further details.
Our last event was a patient/researcher focus day in Manchester in March 2020. See our patient-researcher page here for more details.
Saturday May 2nd 2020 - Virtual gathering
On Saturday May 2nd we held our first virtual gathering. It was fantastic to be able to connect even when we are in 'lock-down'.
First of all we heard from everyone there and welcomed new members, caught up with 'old friends', and had a good discussion around the groups experience with Lenvatinib.
After a break, Emily Dormer joined us to give us some gentle exercises for the head, neck and shoulders to help us with rehab after surgery and other treatments.
Last, but certainly not least, we had Jeff Kaufman from the ACCRF join us to talk through his international view of ACC research and how it's been affected by Covid-19. His presentation can be accessed here.
Saturday November 2nd 2019, Glasgow, Scotland gathering
The last meeting of 2019 was held on Saturday November 2nd 2019 in Finnieston Quay, Glasgow.
It was a fantastic day, where we heard about the AL101 trial soon to open at the Christie (NOTCH focus) from Dr Metcalf, and internationally from Jeff Kaufman of the ACCRF.
After a delicious lunch, we had a group discussion between a surgeon, medical oncologist and the patients and carers around the room. The need for a greater understanding of ACC and how we might get that was discussed. How can we get patient data and use it safely and appropriately to move things forward? What would a registry look like and how can we achieve it?
It is fantastic to see people so engaged and to be so supported by our network.
The ACCRF Presentation can be accessed here.
Saturday May 18th 2019 - London, England gathering
Our last event was in London, England on Saturday May 18th 2019.
We met in Angel, just 10 minutes from Euston and Kings Cross train stations.
After introductions and a chance to chat with others, we shared a light lunch before presentations from Dr Metcalf and Jeff Kaufman on the latest research into ACC. It was fantastic to see so many people there. Check out our Facebook page for pictures from the day.
Saturday 17th November 2018 - York, England gathering
On November 17th 2018, more than 50 people living with Adenoid Cystic Carcinoma and their supporters gathered in York for SGC UK’s network meeting.
In the morning, we held a support session. Those living with ACC and their family and friends all had the chance to talk openly about their experiences.
For many, it was the first time they had met anyone else with ACC. They discussed everything from their diagnosis and treatment journeys, to their struggles finding expert advice about this rare cancer, and how they were dealing with its physical and psychological effects. Over lunch, there was more time for everyone to share information and stories.
In the afternoon, the meeting heard from two expert speakers, and everyone had the chance to ask them questions.
Dr Rob Metcalf, Clinical Medical Oncologist and researcher talked about his work at the Christie Hospital, Manchester. He explained how his research into ACC is looking at how the disease can be tackled in two ways. Firstly, by stimulating the immune system to attack it, and secondly, by targeting the faulty genes that drive the cancer.
Our second speaker, who joined us by Skype from the US, was Jeff Kaufman of the ACCRF (Adenoid Cystic Carcinoma Research Foundation). He gave us an overview of some of the research being done into ACC across the globe. His presentation can be found here.
Want to attend our next meeting? Join our network for updates.