News and Events News September 2022 Newsletter Hello to our new supporters, and hello to our long standing supporters Do you know what aphasia is? Could you explain it to someone who doesn't know? Here's a little help: Aphasia is a communication disability which occurs when the communication centres of the brain are damaged. It is usually caused by a stroke, brain haemorrhage, head injury or a brain tumour. Aphasia makes it difficult to read, write or speak. It affects people differently. Living With Aphasia charity has merged with Say Aphasia A charity in Exeter who also support people with aphasia has now merged with Say Aphasia to become one united charity under the Say Aphasia name. We are all thrilled! This means we can join forces, and combine our strengths to help more people with aphasia across the UK! Exeter ran in a very similar way, and so the transition was easy. We now have new team members from Living with Aphasia - Em and Barbara. We also have Hannah, our new charity coordinator who regularly attends our Hove group. We have new team members! Meet Hannah: I'm Hannah, the charity coordinator for Say Aphasia. I help support our peer leaders and create aphasia friendly communications. I also really enjoy volunteering at our Hove drop-in group. My 'other work' is as an advertising copywriter and I'm a mum of three. Life is busy! I'm hoping to retrain as a Speech and Language Therapist.' Meet Em: “I’m Em, the Peer Leader for our amazing group in Devon and we are very excited to become part of Say Aphasia! Being diagnosed with aphasia doesn’t stop me from loving and being loved. We are still people... and sometimes I think people forget that. I had my stroke at age 24! It affects people who are compassionate, brilliant, resourceful and clever. People say I am funny, hardworking and caring. I’m so excited to lead the group and to leave a little sparkle wherever I go!" Meet Barbara: "I'm really excited to be part of the Say Aphasia team. I was formerly a speech and language therapist working with people with aphasia for many years and running the Exeter group and its volunteers. I'm looking forward to helping Say Aphasia become an even stronger and more brilliant charity." News from our groups Firstly, we are proud to say we have 14 groups across the UK! Exeter The last meeting had 31 people attend! The Exeter group was originally set up as a local aphasia charity, Living with Aphasia. Merging with Say Aphasia offered a great opportunity to widen the reach of aphasia awareness and build a stronger presence in the aphasia community. We’ve been given more opportunities for people with aphasia to get involved in the running of the groups - Em is now the peer leader with our fab volunteers helping out and it’ll be great to have more support from the other Say Aphasia peer leaders. We love bringing people with aphasia together for friendship and support. And are so excited to do this wearing the orange of Say Aphasia.' Cardiff and Vale This group is ran by Barry and Stephen, and supported by their local Speech and Language Therapist Catherine. "We had our biggest gathering yet on Wednesday where we had some 15 people enjoying various challenging games of skill, with varying degrees of success! Future meetings will hopefully include some arts and crafts, with pottery painting being an early request." Abergavenny We are all very proud as our peer leader Nick won an award! We asked our peer leader: Who are you and why are you a Peer Leader? Nick - Peer Leader in Abergavenny: BEM - stroke survivor / aphasia 9 years. Chief Executive - institute Financial planner - Bristol - comedian London , Bath and conference - exciting. Believe helping aphasia suffers. Skipton The Say Aphasia Skipton drop-in group met on 16th September and enjoyed a visit from Katie and Robyn, two Speech and Language Therapists from Airedale Hospital. They came to visit the group to learn more about Say Aphasia and what happens at drop-in. They spent the morning chatting with group members, one of whom they remembered from their Airedale hospital stay (Nigel). It was also humbling to learn that there is currently about an 8 month wait for NHS SLT in this area. They explained that there was no funding available for the NHS to run an aphasia group so were interested to see how the Skipton group is run. It was very positive for the Skipton group to meet Katie and Robyn who were enormously supportive of the group and promised to refer anyone with aphasia who they felt might enjoy the drop-in group. The SLTs were also given a set of Aphasia Information Packs, Skipton drop in group leaflets and some Say Aphasia wristbands. They also agreed to promote the Skipton group on their Twitter account and were interested in the Skipton Santa Fun Run on 27th November 2022 and plans for the aphasia art exhibition planned for Bradford in 2023. Winchester "A positive attitude gives you power over your circumstances! Instead of your circumstances having power over you! Aphasia is not going to stop us!" Our Southampton & Winchester group living by that rule yesterday at their drop in, they had guests, local MP Steve & Councillor Jan. They chatted to the group for around an hour & took on board a few of the discussion points that were raised…! Fantastic… We asked our peer leader: Who are you and why are you a Peer Leader? Jez - Peer Leader in Chichester: I'm the Peer group leader for Winchester and Southampton. I do it to help people who have the same challenges as me! Chichester We are still doing fun pottery classes! The lovely Lola has been running these classes, here is what she says: "I have been attending the Say Aphasia group in Chichester with my husband, who was diagnosed with progressive Aphasia two years ago. As I am a ceramicist, I thought of introducing the activity to group, and was very glad to see the enthusiasm that this brought to the group members. For some, handling clay with one hand was challenging. In the second workshop, we worked on making clay tiles. This was easier for everyone. The tiles were decorated with with imprints of plants, drawings and printed words. During the third workshop, the bisque fired pieces were painted with underglaze colours. Next week, in our fourth workshop, we plan to make some Christmas decorations using pastry cutters and other tools. It will be great to bring the finished pieces to everyone in time for Christmas. These pottery workshops bring a lot interest, satisfaction, and joy. Clay can be a great communication tool and a medium for self-expression for people with Aphasia". Ian, who made a tortoise, said: "This is something I’d never done before my stroke. Great fun and I seemed to be ok at it. Having the use of both hands helped! Shame my turtle legs dropped off!” We asked our peer leader: Who are you and why are you a Peer Leader? David - Peer Leader in Chichester: I am David Mortimer, I take part in the Peer leaders scheme because it is useful that it occupies a good amount of time in running it. I also attend Brighton, Worthing and Woodingdean. In addition, there are also one to one events to go to as well as administrative functions to organise. Lastly I feel that I am able to put something small back into a scheme that has been good to me. Selsey We asked our peer leader: Who are you and why are you a Peer Leader? Mike - Peer Leader in Selsey: I am Mike, a retired volunteer who agreed to attempt the development of an Aphasia group in Selsey. Hove We asked our peer leader: Who are you and why are you a Peer Leader? Paul - Peer Leader in Hove: Hi, I'm Paul, I'm the peer leader. I set the table up, sort out the papers. It's quite a big group it's hard for me but I love. Now I think I have to do the teas and coffee. Darlington We asked our peer leader: Who are you and why are you a Peer Leader? Pete, aged 41 - Peer Leader in Darlington: I had a major car accident in 2017 and sustained a brain injury this resulted in developing aphasia. In the Northeast we have minimal support for aphasia sufferers outside of the hospital. Teesside, County Durham, Darlington & the North Yorkshire is a big catchment area and I was just keen to bring a group to the area. For people with aphasia going out, having a cup of tea and a chat with other suffers is a great building block to build confidence so I wanted to start the local Say Aphasia group to help others. Crawley We asked our peer leader: Who are you and why are you a Peer Leader? Howard - Peer Leader in Crawley: I am stroke survivor and living aphasia. My stroke was October 2019 it was a shock. I am a retired IT professional. My hobbies : playing music (keyboards and guitar) photography and astronomy. I want to give something back to aphasia survivors. I am patient and kind. And I have a advocate to charity Say Aphasia. Brighton Half Marathon 2023 We are at it again - We are partners of the Brighton Half Marathon. This means we have 50 free spaces for you to run the half marathon! All we ask is that you raise at least £150 - and enjoy yourself! A few of us here can speak from experience - It is very rewarding, and the Brighton crowd are brilliant; making the atmosphere great and the challenge worth it! Want to run the Brighton Half Marathon? Click here! Who's with us?! An Inspiration! We’re celebrating this fantastic achievement on Emma completing the Chester Marathon! Thank you so much for raising money for Say Aphasia…Thank you is not enough…! An update from the UTILISE study at UCL What is the UTILISE project about? “UTILISE” (Unification Therapy Integrating LexIcon and Sentences) is a therapy program for everyday sentences. It is designed for people with stroke-related aphasia who have difficulties understanding and producing sentences. In our current project, funded by The Stroke Association, we are testing if the therapy improves understanding and producing sentences. The project takes place at the UCL Department of Language and Cognition. We are turning the UTILISE therapy program into an app We are working with the tech company “Therapy Box” to develop an app version of our therapy. The app will allow people with aphasia to practice therapy tasks from home. This kind of tele-therapy enables high intensity practice. We will soon be running a feasibility trial of the new therapy app Participants with aphasia who are taking part in the new feasibility trial are encouraged to practise tasks in their own time at home. We try to find out how much therapy is needed to get positive outcomes. Want to take part? If you, or someone you know, has aphasia and would be interested in taking part in the trial, please contact us for more information and to be added to the waiting list.Contact details: Ms Fern Rodgers | [email protected] | 020 7679 5785 Contact Utilise Want to help us grow and support more people with aphasia? You can do so by donating below. Please select a donation amount (required) £5 can help us reach out to more people living with aphasia £10 a month can help us run our online support groups, like our weekly Zoom groups, and our 1:1 online befriending. £50 a month can help us run our drop in groups and pay for 13 venues across the UK. £250 a month will pay for our website, which provides vital aphasia information, as well as providing a platform to fundraise and raise awareness of aphasia. £500 can help us attend community festivals to raise awareness and additional funds. £1,000 A one off large donation can help us open up more drop in groups across the UK, to further help the 350,000 people who live with aphasia in the UK. Other Set up a regular payment Donate Manage Cookie Preferences