iiinova — where your digital self keeps evolving

The Lewy Body Society @lewybodysociety.bsky.social · 19h

We are ending the week with a real sense of hope. The Prime Minister Andy Burnham has pledged £33m through the Dame Barbara Windsor Dementia Goals programme to back dementia research and speed up the development of new treatments. 📸 Alecsandra Dragoi / No 10 Downing Street #AndyBurnham #dementia

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The Lewy Body Society @lewybodysociety.bsky.social · 24/09/2026

🧬 Today @amrc-uk.bsky.social, of which we are member, has published a new genomics spotlight report. It highlights how AMRC charities are advancing genomics and supporting its use to benefit patients - from research and infrastructure to policy, diagnosis and treatment. 🔗 bit.ly/4yPMvHb

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The Lewy Body Society @lewybodysociety.bsky.social · 22/09/2026

We have a Youtube Channel (search @lewybodysoc) with informative videos about Lewy body dementia, symptoms, treatment and care. They range from this LBS Community of Practice webinar where experts discuss communication in #Lewybodydementia to Youtube Shorts talking to couples facing it together.

youtube.com

The Community of Practice

Webinar: Communication matters in Lewy body dementia.

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The Lewy Body Society @lewybodysociety.bsky.social · 17/09/2026

Sorry we are going to have to mention the C word! We have taken the very hard decision not to do our Christmas cards or calendars this year. Costs have increased so much it just isnt viable.

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The Lewy Body Society @lewybodysociety.bsky.social · 15/09/2026

At the Wigan Borough Buisness Awards Finalists networking event today. Incredible to see all the talent and ambition we have in our borough. Now looking forward to the awards themselves at the Brick Stadium on Saturday 26th September. #lewybodysocietyat20 #Wigan #WiganBoroughBusinessAwards

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The Lewy Body Society @lewybodysociety.bsky.social · 15/09/2026

As families of loved ones with dementia, we know what a hard road it can be for everyone. The death of parent under any circumstances is hard but the experience seeing them live and die with dementia is incredibly painful. We extend our heart condolences to the Prime Minister and his family.

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The Lewy Body Society @lewybodysociety.bsky.social · 15/09/2026

Are you a nurse, allied health professional or researcher in our Community of Practice for Lewy body dementia? Booking is now open for our upcoming webinar. Topic: Mood disorders in Lewy body dementia Date: Monday 5th October 2026 Time: 12 pm - 1.30pm How: Via Teams #dementia #Lewybodydementia

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The Lewy Body Society @lewybodysociety.bsky.social · 14/09/2026

We are hearing stories like this from Polly Parker about her husband who has died of Lewy body dementia, more and more frequently. Read the Parker family's story. Mike sounds like he was an amazing guy: www.liverpoolecho.co.uk/news/liverpo... #Lewybodydementia

liverpoolecho.co.uk

Dad who spent whole life helping people 'couldn't get help' before he died

Mike Parker was a "very gregarious, outgoing, fun-loving sportsman" who used his passion for sports to help others

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The Lewy Body Society @lewybodysociety.bsky.social · 13/09/2026

Wooohooo! Big shout out to Team Lewy at the Great North Run today, including our fab four from Doctor Who. We were cheering you all on from our vantage point on the bridge. Do we need even more balloons next year? #Lewybodydementia #GreatNorthRun #DoctorWho #Newcastle @bigfinish.bsky.social

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The Lewy Body Society @lewybodysociety.bsky.social · 11/09/2026

We are at the Joint Equadem and INTERDEM Taskforce Symposium on Solutions to Dementia Inequalities in Manchester today. A subject very close to our heart 💙 #Lewybodydementia #dementiainequality #manchester #equadem

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The Lewy Body Society @lewybodysociety.bsky.social · 10/09/2026

Good luck to Team Lewy for the Great North Run this weekend. We will be cheering you on in person, so make sure you look up at the Lovers Lane Bridge about a mile into the race. You won't be able to miss us, look out for the very onbrand blue spotty balloons! #Lewybodydementia #GreatNorthRun

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Dementia Community @dementiacommunity.bsky.social · 09/09/2026

📢 Latest News! 👉 Scarf for Lewy coming to Scotland in 2027 buff.ly/RDR0e1W @lewybodysociety.bsky.social 👉 Local Government and Social Care Ombudsman publishes report into end of life care complaints buff.ly/Lxtz7U5 #news #dementia

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The Lewy Body Society @lewybodysociety.bsky.social · 08/09/2026

Our chief executive hosted a webinar on Capgras syndrome, feat Prof Iracema Leroi, clinical academic at the Global Brain Health Institute, Trinity College Dublin and a consultant geriatric psychiatrist at St James Hospital, Dublin and Rachel Thompson, Consultant Admiral Nurse for Lewy body dementia.

youtu.be

Capgras syndrome in Lewy body dementia

A recording of a live webinar held on 19th July 2021 In Lewy body dementia, problems such as hallucinations and delusions often arise. In some cases, these may present as ‘delusions of…

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The Lewy Body Society @lewybodysociety.bsky.social · 28/08/2026

URGENT: Please email your MP before Sept 2 to ask them to support amendments to the Health Bill? We have a once-in-a-decade opportunity to ensure that millions of unpaid carers across the country gain stronger legal protections and meaningful support from the NHS in England through the Health Bill.

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The Lewy Body Society @lewybodysociety.bsky.social · 19/08/2026

Experiential workshop on communication: firsthand experience how dementia impacts communication for researchers and practitioners. Twenty places available at BRIDGES for Dementia Network+ Annual Conference: www.tickettailor.com/events/bridg... #Lewybodydementia #dementia

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The Lewy Body Society @lewybodysociety.bsky.social · 17/08/2026

Want to know more about what we do? Our chief executive Jacqui Cannon was interviewed buy the Video Journal of Dementia about the work of the Lewy Body Society WATCH HERE: www.vjdementia.com/video/we2fgi... #lewybodydementia

vjdementia.com

The Lewy Body Society's mission and impact | VJDementia

Jacqui Cannon, CEO of The Lewy Body Society, discusses the work done by The Lewy Body Society, highlighting the charity’s...

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The Lewy Body Society @lewybodysociety.bsky.social · 12/08/2026

"Imagine if we treated somebody diagnosed with cancer in that way." Baroness Casey, Chair of the Independent Commission on Adult Social Care. We think about that frequently. As people who have cared for someone with Lewy body dementia, many of us sadly have insight how adult social care is failing.

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The Lewy Body Society @lewybodysociety.bsky.social · 11/08/2026

Twelve years ago today #RobinWilliams died. No one knew at the time he had #Lewybodydementia. His wife Susan Schneider Williams wrote a powerful piece about Robin and the disease that had caused him so much pain.

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The Lewy Body Society @lewybodysociety.bsky.social · 10/08/2026

Early career researcher masterclass: opportunity to present ot research ideas to a panel with lived experience of dementia. Five places available at BRIDGES for Dementia Network+ Annual Conference: www.tickettailor.com/events/bridg... #Dementiaresearch #earlycareerresearcher #Lewybodydementia

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The Lewy Body Society @lewybodysociety.bsky.social · 10/08/2026

Our CEO Jacqui Cannon on the potential new treatment for Lewy body dementia. #Lewybodydementia

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The Lewy Body Society @lewybodysociety.bsky.social · 05/08/2026

Did you catch Rachel Duffy's The One Show report tonight about the dementia awareness games we produced with the University of Liverpool? You may know Rachel as the winner of The Traitors. She is also a dementia advocate after her beloved mum died earlier this year of Parkinson's and dementia.

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The Lewy Body Society @lewybodysociety.bsky.social · 05/08/2026

We have lots of people asking us how they can get involved with dementia research. Here is an opportunity with EquaDem Network Plus in Manchester! Please get involved if you can and are health and social care practitioners, people living with dementia and unpaid carers.

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The Lewy Body Society @lewybodysociety.bsky.social · 29/07/2026

The BRIDGES for Dementia Network+ is a national research initiative bringing together people with lived experience of dementia, researchers, designers, and health professionals. Their goal is to rethink how technology can help people with dementia live full, independent, and connected lives.

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The Lewy Body Society @lewybodysociety.bsky.social · 28/07/2026

We know this is a particular emotive subject for Lewy body families. Delusions (false beliefs) which may include delusions of ‘misidentification’ i.e. not recognising someone or something are more common in Lewy body dementia than in other dementias. #Lewybodydementia #Capgrassyndrome

lewybody.org

The Real Imposter Syndrome: When Lewy Body Dementia Makes Family Strangers | Lewy Body

Capgras syndrome is a delusion of misidentification in which a person believes that someone close to them has been replaced by a double or imposter. In Lewy

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The Lewy Body Society @lewybodysociety.bsky.social · 24/07/2026

SO PROUD 😊 A lovely, lovely way to mark our 20th anniversary. We have been shortlisted for not one but TWO awards - and it means so much as they are in our home borough of Wigan.

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The Lewy Body Society @lewybodysociety.bsky.social · 21/07/2026

Watching Andy Burnham step through the doors of No 10 as our new Prime Minister yesterday, from our HQ in his constituency, we were moved that he chose to spotlight dementia. He shared that his father who is living with dementia would probably never know he has become the leader and his country.

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The Lewy Body Society @lewybodysociety.bsky.social · 16/07/2026

The Lewy Body Society went global this week at AAIC! It is fantastic to know our dementia games are winging their way to as far afield as Brazil and Sweden. #Lewybodydementia #AAIC2026

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The Lewy Body Society @lewybodysociety.bsky.social · 16/07/2026

We are proud members the Association of Medical Research Charities. Their expert review audit is a key part of its membership, demonstrating we meet the highest standards of practice, strengthening confidence in the medical research charity sector among researchers, funders, partners and the public

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The Lewy Body Society @lewybodysociety.bsky.social · 14/07/2026

Great to see the government understanding the value of the incredible unpaid carers in this country. Thoughts from our CEO Jacqueline Cannon in the Department of Health and Social Care press release about its Unpaid Carers Action Plan. #dementiacarers #unpaidcarers #Lewybodydementia

gov.uk

Millions of unpaid carers to get recognition and earlier support

First ever cross-Government action plan to support unpaid carers published

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The Lewy Body Society @lewybodysociety.bsky.social · 13/07/2026

Great to see Lewy Body Society friends and LBS special advisory committee members Dr Anto Praveen Rajkumar Rajamani from University of Nottingham and Dr Paul Donaghy from Newcastle University at AAIC. #AAIC2026 #Lewybodydementia

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The Lewy Body Society @lewybodysociety.bsky.social · 12/07/2026

We are at Alzheimer's Association International Conference in London today. We have our dementia adult and children’s games and Alex Winstanley's children's book What Are Lewy Bodies for sale. Come and see us at stand 1501! #AAIC2026 #Lewybodydementia

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The Lewy Body Society @lewybodysociety.bsky.social · 21/06/2026

The Lewy body dementia Community of Practice (LBD CoP) is hosted by The Lewy Body Society and is aimed at Nurses and Allied Health professionals who are interested in learning more about Lewy body dementia. See here for information about joining: www.lewybody.org/professional...

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The Lewy Body Society @lewybodysociety.bsky.social · 19/06/2026

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Rob “Bloody” Valentine @mrrobvalentine.bsky.social · 14/06/2026

Right. Training begins now for the Great North Run. I’m raising money for @lewybodysociety.bsky.social and it’d wonderful if you could sponsor me. 🏃🏻‍♂️ ajbellgreatnorthrun2026.enthuse.com/pf/robert-ta...

Rob Valentine looking hot and sweaty on a leafy road.

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The Lewy Body Society @lewybodysociety.bsky.social · 11/06/2026

Great to see our CEO Jacqui Cannon featured in Cheshire Life Magazine recognizing her achievements at the helm of the Lewy Body Society: www.greatbritishlife.co.uk/magazines/cheshire/26012784.2026-inspiring-women-awards-lowry-hotel/ #LewyBodyDementia #CheshireLife

greatbritishlife.co.uk

Meet the women who are being celebrated in 2026.

Celebrating the achievements of women locally, nationally and across the globe

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The Lewy Body Society @lewybodysociety.bsky.social · 10/06/2026

On our way to the Carers Week event at Portcullis House in Westminster. Looking forward to representing the concerns and needs of dementia carers to politicians and decision-makers. #CarersWeek #dementiacarers @carers-week.bsky.social

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The Lewy Body Society @lewybodysociety.bsky.social · 09/06/2026

Lewy Body Society ambassador Karen shared her story of building her own carer-friendly community for Carers Week! #CarersWeek #DementiaCarers #LewyBodyDementia

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The Lewy Body Society @lewybodysociety.bsky.social · 08/06/2026

We are delighted to be a receipient of NIHR funding to further our support for early-career researchers. It is critical we encourage the next generation of dementia researchers to work towards a better understanding of #Lewybodydementia for earlier, more accurate diagnosis and better treatment.

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Carers Week @carers-week.bsky.social · 08/06/2026

Carers Week is made possible through Carers UK working together with six other major charities: @ageuk.bsky.social, @carerstrust.bsky.social, @lewybodysociety.bsky.social, @meassociation.org.uk, @mndassoc.bsky.social, @rethinkcharity.bsky.social

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Carers Week @carers-week.bsky.social · 08/06/2026

#CarersWeek is here! Join thousands of people taking action to ensure more communities understand, recognise, and empower unpaid carers.  Get involved and together let’s build carer friendly communities across the UK. Thank you @tsbbank.bsky.social for being our headline sponsor this year.

Illustration of a group of eights people, dressed wearing bright clothes against a backdrop of buildings in shades of blue. And a dog. Copy reads 'Building Carer Friendly Communities - Carers Week report 2026'

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The Lewy Body Society @lewybodysociety.bsky.social · 06/06/2026

🎉 Woo hoooooo. We have made it - 20 years! We have been so touched by all the messages and birthday wishes. And as we blow out the candles on our cake, our wish is to hit 6,000 signatures on our Lewy List petition on our birthday weekend: www.change.org/p/sign-the-lewy-list #lewybodysocietyat20

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The Lewy Body Society @lewybodysociety.bsky.social · 05/06/2026

Thank you, Rob, for your kind words and your support as patron. Happy 20th birthday to us, we could not be happier than spending it with our lovely Lewy family - even it is one none of us want to belong to 💙 #LewyBodySocietyat20 #LewyBodyDementia #Dementia

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The Lewy Body Society @lewybodysociety.bsky.social · 05/06/2026

Rachel is a familiar face - and voice - to many of you. 😍 We are so proud to have been able to fund the post of Consultant Admiral Nurse for Lewy body dementia. She is a lifeline with boundless expertise. #lewybodysocietyat20 #LewyBodyDementia #dementia #admiralnurse @racheladmiralnurse.bsky.social

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The Lewy Body Society @lewybodysociety.bsky.social · 05/06/2026

Dr Jay Amin is one of the many academics the Lewy Body Society has funded over the last two decades. Seeing their progress makes us excited to see what this year's recipients of our £500,000 anniversary fund will achieve. #lewybodysocietyat20 #LewyBodyDementia #dementia @unisouthampton.bsky.social

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The Lewy Body Society @lewybodysociety.bsky.social · 05/06/2026

On the eve of our 20th anniversary, our founder Ashley Bayston and chief executive Jacqui Cannon have published an open letter to Lewy Body Society friends, families, carers, researchers and supporters. Read their words here: www.lewybody.org/dear-friends-families-carers-researchers-and-supporters/

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