Speak Up for Aphasia: A Global Awareness Campaign Update

Speak Up for Aphasia: A Global Awareness Campaign Update

Guest Claire Bennington updates on fundraising for an international aphasia awareness campaign creating a suite of animated videos in multiple languages, launched worldwide with one consistent message. The Tavistock Trust for Aphasia has pledged £35,429 if matched; the campaign is at 57% (about £22,304/42,000 AUD) and aims to raise the remainder by end of June 2026, with a global launch targeted for Aphasia Awareness Month in June 2027. Partners include the Collaboration of Aphasia Trialists for native-speaker translations, champion networks, and free hosting of assets. The message emphasizes “recognize, respond and respect” and that aphasia does not affect intelligence; listeners are asked to donate, fundraise, provide support letters, and follow “Speak Up for Aphasia” on Facebook.

00:00 Welcome and Hosts
00:18 What Is Aphasia
01:24 Campaign Mission and Funding Goal
05:16 Global Partners and Translations
06:42 Public Message Recognize Respond Respect
09:03 Timeline to June 2027 Launch
11:09 How You Can Support
13:02 Wrap Up and Resources

Facebook:  https://www.facebook.com/profile.php?id=61572140991752

Donate to the International Aphasia Awareness campaign:

https://justgiving.com/campaign/qarc-uq-aphasia-awareness

Transcript

Claire Bennington Update

Claire: [00:00:00] We have a tagline of recognize, respond, and respect. And we want the general public to just know some really simple things that they can do that will make interactions for people with aphasia a lot, a lot easier as they go about their daily life

@Rob: Hi, and welcome everybody, and we hope you enjoy this podcast called On The Tip of My Tongue. Now, I'm Rob Edwards. 

Jon: And I'm Jonathan Hirons. 

@Rob: And this podcast is a follow-up to a film which Jonathan made about aphasia. So what is aphasia? Well, it's a condition caused by some kind of injury to the brain, which is often could be a stroke or could be just falling off a bike, and it affects your ability to use language in all its forms: speaking, writing, reading, sending texts, whatever.

350,000 people in the UK suffer from a debilitating condition called aphasia. [00:01:00] Fewer than half this number suffer from Parkinson's, and yet most people have heard of Parkinson's, whilst almost nobody has heard of aphasia

audioJonathanHirons11641340409: so Claire we, we spoke, um, last last year about the campaign that you're s- you're setting out to get aphasia much well known. Um, h-how's it going? You have to remember that some people listening to this probably don't know what you're doing at all, so perhaps you need to give a, full update.

audioClaireBennington21641340409: Thank you, Jonathan

 Claire: i'm Claire Bennington.

audioClaireBennington21641340409: And thank you for having me back on, on the Tip of Your Tongue. It's great to have this opportunity. So we are raising funds for an international aphasia awareness campaign. So we're raising funds to be able to develop the assets for that campaign, which will be a suite [00:02:00] of animated videos of different lengths in as many languages as our funding will allow.

And our idea with this campaign is that around the world we launch exactly the same message about aphasia at exactly the same time everywhere around the world. And if we get everybody living and working with aphasia, or as many people as we can involved with this, can we make a difference with one consistent, clear message as opposed to lots and lots and lots of individual messages which may or may not cut through to people?

We are raising funds trying to match a very generous pledge that the Tavistock Trust for Aphasia [00:03:00] have made to us. So They've offered £35,429 if we can match it. So we have to raise exactly that amount to be able to unlock their offer. And so we have been working really hard over the last few months trying to connect with the aphasia community around the world, and that's not just people living with aphasia, it's people who work with people with aphasia as well, whether that be clinicians or researchers- different consumer organisations around the world trying to raise this matched funding.

And at the moment we're at 57%. So we've raised over 42,000 Australian dollars, which is about £22,304. [00:04:00] So we're not doing too badly. But we've still got a way to go. But we're trying to have a final push to raise the remaining funds by the end of June 2026. And we're hoping that we can take advantage of June being Aphasia Awareness Month for people to think about raising some funds for this campaign whilst they're going about their other aphasia awareness activities during June.

audioJonathanHirons11641340409: Thank you. That's a great answer. That tells us everything. It it's a fantastic thing you're doing, actually. And I think the thing that I picked up what you've just said is getting that message at the same time for everybody because we all do our bit, as we all do our bit [00:05:00] in our own different ways. But of course quite often it-- those-- either other people like me don't know about these things, there's no cohesion, is the word I think I'm looking for about the message that we do. And I think what you're doing is, is going to go a long way to do that.

And also not just in English, which is the other thing. Can I just ask obviously you've got people with non-English speakers on board already. Is that right?

audioClaireBennington21641340409: We have partnered with various organisations to help us to implement the campaign. And a very important partner is the Collaboration of Aphasia Trialists, who have offered to help us in a number of ways. They have offered to help with translating those campaign assets into other languages by native speakers.

[00:06:00] So we're not using AI to do this. They've also offered to help identify campaign champions in the different countries. Now, campaign champions are going to be a really important part of our The way we distribute the campaign and we will need people all around the world to be able to distribute the assets within their own local networks.

But also report back to us as well, so that we have information about how far that information has gone how it's been distributed, how many downloads there might have been. And the collaboration of Aphasia Trialists have also offered to host the campaign assets on their website, so they could be downloaded directly from that website. materials, they will be free for everyone. That is our aim. This campaign has [00:07:00] been designed over a number of years through my PhD. This particular campaign is aimed at the general public. And the assets are going to have a pretty tight message. It's not gonna be saying absolutely everything that there is about aphasia.

It's a tight message about what the general public really need to know about aphasia. So they need to have an understanding of what aphasia is, what it isn't the impact it has on people with aphasia and their family and friends. But also what people in the general public can do to support people with aphasia if they meet them out in the community.

And so we have a tagline of recognize, respond and respect, and we want the general public to just know some really simple things that they can do that will make [00:08:00] interactions for people with aphasia a lot easier as they go about their daily life.

audioJonathanHirons11641340409: That that's a very powerful message actually because obviously those of us we has a-- have aphasia quite often people don't understand. The underlying problem with-- of tiredness and, missing my words and all the sort of stuff that you have to go through. And how difficult it is for people who have aphasia, how draining it can be to have aphasia, to try and be in a be in a normal conversation, it's really hard work for a lot of people to actually catch up, to keep up with conversations.. So I think That's a great message, I think that would be-- that'd make a huge difference.

audioClaireBennington21641340409: One of the very important messages that people with aphasia from around the world have told us, they really want that message about their intelligence not being [00:09:00] impacted by their aphasia to come through loud and clear. And that's certainly one of the things that really concerns a lot of people with aphasia, is how they're perceived by people who don't understand the condition.

So we want to change that. It's been going on for too long.

audioJonathanHirons11641340409: That's fantastic. And you say you've got time to the end of next month to finish off. It, it-- At the end of next month, whatever happens, the pro- project will start i- in earnest, . Is that right?

audioClaireBennington21641340409: Our plan would be, obviously, we hope to raise these match funds because that will give us double the resources. But we've already raised an amount of money. Our plan will be to develop the campaign assets as far as our funding will allow in as many languages as we can. With the aim of them being launched in Aphasia Awareness [00:10:00] Month, next June, 2027.

So w-we will have that time to get the animated videos developed, the translations correct and verified and make sure people are happy with the assets that are being developed.

audioJonathanHirons11641340409: So its launch date basically is 2027, June 2027.

audioClaireBennington21641340409: That's what we're aiming

the idea will be that, that, we will be having a lead-up to the launch, which I would i-imagine being at the start of June. But there will be a lead-up to that where the campaign champions will know what they're doing, and can be getting the word out to their networks that this is happening.

It's really important that people know about it. But absolutely everyone- Has got a role to play in this. It's not just down to aphasia organizations, or it's not just down to [00:11:00] clinicians. Everybody can do something to help spread the word and get the message across.

And we talked last time about how difficult it is to get beyond that bubble of people who know.

Hopefully if there's more of us doing it, it will reach more people

outside of that 

Yes, and they're a very hard audience to

audioJonathanHirons11641340409: Tell me about it.

audioClaireBennington21641340409: A few things that people could do to support us and to help us to reach this target. So obviously, donate if you can. Any amount is appreciated, no matter how small. Every single pound or dollar counts. But, if people can do a little bit of fundraising, or if their teams or groups can run a little fundraiser during June for Aphasia Awareness Month and donate those funds to us, they would be much appreciated.[00:12:00] 

But also demonstrate that people are behind this campaign, and they can do that either by maybe providing a letter of support to me which they could send to my email address. If that's an organization, having their organization's logo on it would be helpful. But we've also launched a new Facebook page called Speak Up for Aphasia to really help keep communication with the aphasia community going and spreading the word about the work that we're doing.

So I'd really encourage people to follow our Facebook page as well perhaps be able to show their support for the campaign on that page.

audioJonathanHirons11641340409: What I'll do at this end is all your links will be on this- This podcast so that people can get to [00:13:00] you through the podcast as well. And obviously within the podcast we'll use your links

audioClaireBennington21641340409: help get the word out, Jonathan and anything other people can do to spread the word about this campaign.

Thank you very much.

Thank you, and lovely to see you

audioJonathanHirons11641340409: to see you too. We'll be in touch,

audioClaireBennington21641340409: Bye.

audioJonathanHirons11641340409: Bye.

Speaker 3: Thank you for listening to this On the Tip of my Tongue podcast. We hope you found it helpful and informative. Now, if you want more help and information about strokes and aphasia, please go to stroke.org.uk. Say Aphasia, that's S-A-Y Aphasia, all one word, .org or the Aphasia page of nhs.uk.

This has been a Buffalo Lounge production. Please follow Buffalo Lounge on all the socials

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