Hi there. Welcome to our summer newsletter. Since we last talked, we’ve been to Buckingham Palace, France and all over our socials...

Sea Aphasia swims the channel
Speech and Language Therapist and great friend of Say Aphasia, Kirsty Maguire, took on the iconic swim in aid of our charity.

Along with a team of 5 she completed the ‘Everest of Swimming,’: the 21 mile stretch of water that separates England and France. 

The attempt was scheduled to begin on Saturday 17th June, but storms across the channel postponed it until Thursday 22nd June - an agonising wait for all concerned.

When the swimmers finally took to the water, they encountered thousands of jellyfish. But they were also, quite wonderfully, accompanied by a pod of dolphins.

They finished the epic swim in 13 hours 14 minutes. 

Of the challenge, Kirsty said ‘There are more than 350,000 in the UK living with aphasia and yet 84.5% of the population don’t know what it is.

More people have aphasia than Parkinson’s or MS. It’s about time that awareness and support for this condition changes.

So, if I can do anything to contribute to that, then this journey has been worth it.’

And worth it is an understatement.

So far, Kirsty and the team have raised over £9,000 for Say Aphasia. The donations continue to roll in, with many people having been inspired by the team’s commitment and the chance to be part of real change for people with aphasia.

If you’d like to add your donation, we'd be so grateful.

Donate to Kirsty's fundraiser

Donate to George's fundraiser

You can see more footage of the event below.

Thank you so much Kirsty and team, now put your feet up!

Watch the video

London Marathon success
An amazing supporter ran the London Marathon for Say Aphasia.

Emma Langley very generously took on the 26.2 miles for our charity. 

She says ‘Someone very dear to me and my family suffered a stroke whilst undergoing brain surgery. I am blessed to say, being the strong lady she is, that she is making a good recovery.

However, aphasia has been one of the most notable and lasting effects.

Say Aphasia offers support to those struggling with aphasia in a safe environment, with support from others experiencing similar challenges. 

I know the support offered to my special person in her time of need was invaluable to her and her family, hence why I ask you please to spare a few pennies so they can continue to help others.’

Emma completed the marathon and raised over £5,000. Money that will directly go to helping more people with aphasia. 

We are so grateful to you Emma, and we hope you enjoyed the day. 

 

Sweet sounds: the Aphasia New Music Group
Colin Lyall, founder of Say Aphasia, has recently performed as part of an aphasia music group. And he’s now taking the show on tour.

The Aphasia New Music Group is a collaboration between adults with aphasia, their loved ones, and music makers. The project is co-produced by Oedipa and Second Movement, and delivered in partnership with senior speech and language therapists at UCL’s Communication Clinic.

Over several months, the group has developed a new music practice and co-composed original music. They performed their final pieces at two shows at the Bloomsbury Theatre on Tuesday 6th June.

Within the performances, members talked about their experiences of aphasia and how music has helped them. 

They talked about how wonderful it was to be part of the project and express themselves through music, singing and art. And how powerful the project has been in improving feelings of anxiety and low mood.

The London performances were a great success. So Colin will now be taking his music group to do workshops at Say Aphasia drop in groups around the country. They’re really looking forward to getting involved and creating some live music of their own.

Here are the tour dates:

Cardiff
Wednesday 5th July 1.15pm

Exeter
Tuesday 11th July 1.30pm

Hove
Friday 14th July 11:30am

Skipton
Friday 21st July 1pm

Winchester
Monday 24th July 12 noon

Eastbourne
Thursday 27th July 11:30am

Chichester
Tuesday 1st August 12:30pm

You can watch a recording of the London performance below.

If you’d like any more information about the tour, you can get in touch with Colin here.

 

Colin’s Coronation Honour
Colin Lyall, founder of Say Aphasia has been recognised as one of the 500 Coronation Champions nationwide.

In celebration of his extraordinary commitment to volunteering for Say Aphasia, Colin was chosen for this prestigious award.

These awards were given together with Her Majesty Queen Camilla in the coronation year. And they are a way for the King and Queen to recognise people who give their time, energy and commitment to causes across the country.

As part of his award, Colin received a medal, certificate and invitation to Buckingham Palace.

After attending the event with his wife, with the Prince and Princess of Wales in attendance, he had this to say: ‘we had such a lovely day at the Buckingham Palace garden party...Thousands of people all dressed up to the nines!

The weather stayed sunny with just a few spots of rain just as it was finishing.

Afternoon tea was served with a Regal Crest on the delicious cakes.

Seeing William and Kate and the rest of the supporting family close up was marvellous. It was an absolutely spectacular day to remember for a long time!’

Catherine Johnstone CBE, Chief Executive of Royal Voluntary Service said: “Each of our Coronation Champions displayed a commitment and contribution that far exceeds any expectation and we're overjoyed to honour and thank them during this exciting point in history.”

We’re so proud of you and pleased for you Colin. And so grateful for all you do to help people with aphasia. 

 

Spreading the word in the north east
Our brilliant Darlington peer leader has been busy improving aphasia awareness in the north east of England.

Pete Coady was invited to talk to a team of speech and language therapists who are working for Speech Therapy North East.

With a large team of associate independent speech and language therapists, the company provides services to clients across the area. 

Pete talked about his experience with aphasia and about the work he does for Say Aphasia. Since the presentation, he’s had a number of people asking about the Darlington  drop in group.

These type of presentations are a great way to let more people know about our services and groups.

That’s because referrals by speech and language therapists are an important way that we grow our local membership numbers. 

Great work Pete.

 

Amazing aphasia art exhibition a great success
The Say Aphasia art exhibition in Bradford has now finished following a fantastic few months.

In the March newsletter we told you about an art exhibition created by talented Bradford artist and Say Aphasia Skipton peer leader Mark Chappell. 

The exhibition was a huge success, raising vital awareness for aphasia and even attracting a couple of celebrity guests.

Jessica Knappett, comedian, actor, writer, producer and artist (whose portrait appeared in the exhibition) popped in, as did Marie McCahery from Bradford Movie Makers.  

 

As well as displaying some of his portraits, Mark created a series of augmented reality posters for the exhibition.

These were designed to raise more awareness of aphasia in the local community and to highlight what it’s like living with aphasia.

He feels motivated to do it because, he says, ‘the recent pandemic has had an impact on everyone. But for people with Aphasia, normal life means living under a type of lockdown anyway: some cannot leave home as they cannot communicate and are very isolated.’ 

Fantastic work Mark. You're an inspiration.

 

Aphasia awareness month
June is Aphasia Awareness month. Here’s what we got up to.

This June we’ve been shouting from the rooftops about aphasia. Because despite more than 350,000 people in the UK living with aphasia, most people don’t know what it is. We want to change that.

Aphasia bitesize emails
Here at Say Aphasia we’ve been sending out emails to our mailing list throughout the month, focussing on things like:

• how to communicate with someone with aphasia
• the events and activities we do as a charity to spread the word
• how we support people with aphasia
• our peer leaders and what they do
  
  

Aphasia daily art
Our wonderful resident artist Mark, peer leader at Say Aphasia Skipton, has been posting his portraits daily on Facebook.

Mark’s creativity shows that aphasia and art can go hand in hand. 

See Mark's portraits

A-Z of aphasia
Over on our socials we’ve been posting our own A-Z of aphasia. We’ve looked at things like:

• B is for brain - how our brains can relearn to communicate
• D is for driving - how it’s possible to learn to drive again after a stroke with aphasia
• G is for games - how we use play and games at our drop in groups to create a fun, welcoming environment for everyone

You can check out all our A-Z posts below.

Check out our A-Z here

  

Aphasia awareness on ITV
We’re delighted to have featured in an ITV news story during Aphasia Awareness month.

Coverage like this is invaluable for people with aphasia - and for bringing more people to our drop in groups who will benefit from our welcoming community. 

Watch the video

Great work team!

 

The poetry of aphasia 
One of our members has shared how her love of poetry helps with her aphasia.

Anna, one of our members in Sussex has always loved poetry. Then, when she had a stroke just over three years ago, she found that it also helped with her reading and writing as she now lives with aphasia.

She started by trying to copy the words, one letter at a time, which took her ages. After some months she was able to write whole words and her writing had improved:

Over the last three years Anna’s handwriting has improved considerably. It still takes her a long time copying out poems but her poetry has been her inspiration. 

Anna wrote the poem below to express how she feels about when she suffered the stroke.

It shows how valuable creativity can be when living with aphasia. And that with determination and practice, you can continue to enjoy the passions that brought you joy before you developed aphasia.

 

 I remember a Monday, October 25th, 2019

I remember going upstairs to work

I remember something was wrong

I remember lying on the bed at work

And then I do not remember

I do not remember the mechanical thrombectomy

And then when I awoke

I could only say 'no' and 'monster'

I remember almost 5 months in hospital

I remember learning to walk

And - very slowly - to talk

And then I went home

I remember many things

And also the forgetting

But what I remember most

Was kindness and joy

 

We’re so grateful to you Anna for sharing your words and raising more awareness of aphasia.

    

 

The games have begun
Our Woodingdean group held a boules tournament at their last drop in.

Our drop in groups offer much more than a chat and a cup of tea. There are regular activities for those that want to take part.

This can take the pressure of talking, and give members the chance to be active and have fun.

At the last Woodingdean group, peer leader Mon decided to hold a boules tournament.

Each pair played the best of three games with the winner going forward to the next round.

The final was played over the best of 5 games. Well done to Hanka, the winner!

Thanks for reading. Have a great summer. And we'll be back with another update in September.