Lewy Body Society @lbsorg Twitter profile

Last Seen Profiles

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Lewy Body Society

@lbsorg

7 months

A huge THANK YOU to #sophiefromromania for raising awareness & funds for @lbsorg Total is currently at £538 #ShiningALight on #lewybody Sketches by @LewyLady

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Lewy Body Society

@lbsorg

8 months

@ruskin147 @LewyLady Thank you for your support @ruskin147 - it means more people will learn about a dementia that is misunderstood by many, and still frequently misdiagnosed by doctors We are big fans of you, the Prof and, of course, #sophiefromromania btw💙 We wish you many happy walks.

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Lewy Body Society

@lbsorg

2 years

We did it! A giant mile-long scarf wrapped SEVEN times around the @RoyalAlbertHall . A huge thanks to all the knitters, volunteers and to Susan Hampshire & @onebiggins for your incredible support. A few more people now know about Lewy body dementia thanks to #AScarfForLewy 💙

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Lewy Body Society

@lbsorg

2 years

This week is Dementia Action Week and the theme is diagnosis. It is so important that people receive an accurate sub-type diagnosis to ensure that the right support, care and medication is made available. #DAW2022 #DementiaActionWeek #LewyBody

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Lewy Body Society

@lbsorg

10 months

Good luck to @ZaltzCricket who takes to the #BlackChair this evening representing @lbsorg on Celebrity Mastermind. You can see how they get on answering questions about their Specialist Subject tonight on @bbcone at 19.30 #Mastermind #BlackChair @MastermindQuiz @CliveMyrieBBC

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Lewy Body Society

@lbsorg

9 months

💙 A proud moment for us 💙 The #MillenniumBridge in all its glory - lit up blue for the first ever #WorldLewyBodyDay , what an end to an extraordinary day. Thank you for all the support! @altweet_pet @ChronicleLive @BBCNEandCumbria @itvtynetees #Newcastle #Gateshead

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Lewy Body Society

@lbsorg

2 years

Inspiring contribution to #ILBD2022 from Susan Williams, talking about her husband Robin Williams’ symptoms and how they felt alone in dealing with them. “Diagnosis is everything, for everyone” “His symptoms were being treated, but not the disease”

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Lewy Body Society

@lbsorg

3 years

The Lewy Body Society is very sad to hear that our Patron Miss June Brown OBE has died and we would like to offer our deepest condolences to her family and friends for their loss.

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Lewy Body Society

@lbsorg

3 years

Hallucinations can be one of the most challenging symptoms of LBD. We've published a new leaflet by @raheli01 with tips for people living with LBD and carers: Also join our webinar on 5th July to ask Qs of our experts. Register:

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Lewy Body Society

@lbsorg

4 years

Vertical Entertainment will release Robin's Wish on demand and digital on Sept. 1. The film, which is directed by Tylor Norwood, will for the first time explore Robins' fight against Lewy body dementia. Please take a few mins to watch this trailer.

Robin Williams' final days detailed in touching trailer for new documentary 'Robin's Wish'

Robin Williams' final days and his battle with a deadly neurodegenerative disorder take center stage in the exclusive trailer for 'Robin's Wish,' a new documentary about the beloved comedian and...

ew.com

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Lewy Body Society

@lbsorg

9 months

Today is the first #WorldLewyBodyDay . We, along with @lewybodyint @a2mcl @LewyBodyIRL @lewybodyny @LBDAssoc @LewyBodyArg , are calling for improved diagnosis rates and better care for millions living with Lewy body dementia across the globe. #ShiningALightOnLewy @raheli01

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Lewy Body Society

@lbsorg

9 months

Thank you to everyone who attended our World Lewy Body Day pre-event for Parliamentarians at Portcullis House this afternoon. There was great interest in our campaign to shine a light on the underdiagnosed and misunderstood form of dementia that is Lewy body dementia.

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Lewy Body Society

@lbsorg

4 years

We’re delighted to share the programme for the #LewyBodyUK scientific conference on 15th June! Join us to hear about the latest LBD research. More details and book: A free online event, open to all including people living with LBD and carers

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Lewy Body Society

@lbsorg

1 year

This #WorldAlzheimersDay we are raising awareness of Lewy body dementia - “The most common type of dementia you have never heard of”. We are the only charity in the UK – and the first in Europe – dedicated exclusively to Lewy body dementia:

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Lewy Body Society

@lbsorg

8 months

Wendy shared her life with dementia fearlessly with the public. She gave voice to a section of the population that is often ignored or misunderstood. We hope her family take comfort in the knowledge she changed people's perception on what living with dementia can be like.

DrDr (😊)Wendy Mitchell

@WendyPMitchell

8 months

This is Sarah and Gemma, Wendy’s daughters. Our mum died peacefully early this morning. She wrote a blog post before she died so you can read about it from her perspective. Sarah and Gemma

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Lewy Body Society

@lbsorg

2 years

Rachel ( @raheli01 ) has been a specialist dementia nurse for over 25 years and works every day to support and empower people living with dementia and their families. Here she talks about why Lewy body dementia is a challenging condition to live with, and why diagnosis matters 👇

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Lewy Body Society

@lbsorg

9 months

It is #WorldLewyBodyDay ! Globally we are shining a light on Lewy - the most common type of dementia you have never heard of @LewyBodyArg @LBDAssoc @lbd_australasia @LewyBodyIRL @SportEducation @a2mcl @lewybodyny @lewybodyint Lewy Body Dementia Canada and Lewy Body Belgium

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Lewy Body Society

@lbsorg

3 years

Love knitting? 🧶 Want to help with a massive awareness raising project? 💙 On Thursday 22nd Sept we are wrapping a huge scarf around the entire circumference of @RoyalAlbertHall in London, a massive 244m. #AScarfForLewy

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Lewy Body Society

@lbsorg

2 years

A huge thank you and congratulations to @ClarissaGiebel for completing the #londonmarathon2023 for @lbsorg next up it’s the #chicago marathon. 👏🏃‍♀️🌟

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Lewy Body Society

@lbsorg

2 years

Today’s the day … #aScarfforLewy

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Lewy Body Society

@lbsorg

3 years

Dotty Days is here! Today marks the start of Lewy body awareness week. We’ll be sharing news throughout the week and ask you to help us raise awareness of Lewy body dementia. We’d love to see you in your dotty clothing or accessories. Tag us and help get #DottyDays trending!

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Lewy Body Society

@lbsorg

2 years

Good morning and welcome to Lewy Body Dementia Awareness Week 2022! Also known as #DottyDays 🔵 This week we’re going to be sharing lots of information about #LBD , including the symptoms and treatment. We’ll also share your Dotty pictures so please tag us!

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Lewy Body Society

@lbsorg

1 year

Happy #InternationalNursesDay day to all the amazing nurses who do such wonderful work, special mention to our @lbsorg funded #admiralnurse @raheli01 and not forgetting #RachelWebb and great supporters of the society @MarkOakley20 & @MrsTracyKirkham

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Lewy Body Society

@lbsorg

5 years

Fantastic turnout for our workshop at #UKDC2019 . Our CEO Jacqui is telling the audience about our work, our partnerships with @DementiaUK and @beatdementia and why it’s so important that #LBD is diagnosed, so patients can get the right treatment & support

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Lewy Body Society

@lbsorg

1 year

Thank you ⁦ @johnmcdonnellMP ⁩ for taking the time to speak to our carer Vicky about #LewyBodyDementia #CarersWeek2023

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Lewy Body Society

@lbsorg

2 years

Today’s the day! This morning we are wrapping a giant scarf around @RoyalAlbertHall to raise awareness of Lewy body dementia. Scarves knitted lovingly by those affected by the disease. Come and help if you are nearby! #AScarfForLewy

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Lewy Body Society

@lbsorg

3 years

One of our key aims as a charity is to improve the understanding, skill level and confidence of medical professionals who support people living with LBD. We're delighted to be supporting the Lewy Body Academy which aims to do just that. Find out more:

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Lewy Body Society

@lbsorg

5 years

A heartfelt thank you to all the cast, crew and production team at @Showtime48Hour . Tonight’s performance of Singin in the Rain was incredible. You have made a huge difference to our small charity, raising awareness and helping to fund research into Lewy body dementia

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Lewy Body Society

@lbsorg

3 years

Congratulations to our Patron June Brown for her OBE in the New Years Honours for her services to drama and to charity. We are delighted to have had June’s support since our creation as a charity 15 years ago, and send her our heartfelt thanks and best wishes 💙

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Lewy Body Society

@lbsorg

1 year

This #WorldAlzheimersDay we are raising awareness of Lewy body dementia - “The most common type of dementia you have never heard of”. We are the only charity in the UK – and the first in Europe – dedicated exclusively to Lewy body dementia:

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Lewy Body Society

@lbsorg

9 months

Delighted to announce Lead Admiral Nurse @MarkOakley20 as an ambassador for The Lewy Body Society. He has a wealth of experience and expertise in dementia care and we look forward to him helping shine a light on the second most common form of dementia. #lewybodydementia

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Lewy Body Society

@lbsorg

3 years

We’ve had a brilliant day hearing about all the latest research developments for the diagnosis and treatment of Lewy body dementia. Thank you to all the speakers and everyone who attended. The day was recorded and we will share the link when it’s ready 💻

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Lewy Body Society

@lbsorg

7 months

This is very helpful. It is so important for people to understand how the dementias differ. #Lewybodydementia #dementia

Melissa Batchelor, PhD, RN, FNP, FAAN

@MelissaBPhD

7 months

Unlike Alzheimer's disease, people with early-stage Lewy body dementia typically retain their long-term memory. Tune in and learn ▶ What is Lewy Body Dementia? #dementia #lewybody #memory

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Lewy Body Society

@lbsorg

9 months

Delighted to have shone a light on Lewy body dementia at Westminster! Thank you to @ConorMcGinn , @ChiOnwurah , @BillWigginMP , Sir George Howarth MP, @marionfellows , @PGibsonSNP , @AmyCallaghanSNP , @TanDhesi , and reps from @HarrietHarman and @MarieRimmer . #WorldLewyBodyDay

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Lewy Body Society

@lbsorg

4 years

On our Zoom webinar this morning over 50 participants from all over the UK (and Australia!) heard from Chris @chris40781 & Rachel @raheli01 about what life with Lewy body dementia is really like, how to live well & the support available. We will make a recording available ASAP 🎥

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Lewy Body Society

@lbsorg

1 year

Lewy body dementia is the 2nd most common age related dementia & is often misdiagnosed. Do you know how to recognise it? How to support that person & their family once you have? Develop your expertise & increase your confidence: #LewyBodyMC

Lewy Body MasterClass 3 | Neurology Academy

neurologyacademy.org

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Lewy Body Society

@lbsorg

7 months

Happy Easter to everyone living with Lewy body dementia, their loved ones, those missing their loved ones, carers, and the research and medical communities. #Lewybodydementia #Dementia

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Lewy Body Society

@lbsorg

5 years

We are very proud to work with @DementiaUK to support the Admiral Nurse Dementia Helpline. @raheli01 @pam_kehoe and the rest of the team do an amazing job helping anyone affected by dementia with information, advice and support #UKDC2019

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Lewy Body Society

@lbsorg

4 years

Next Monday sees the UK launch of Robin's Wish, the poignant story of Robin Williams' last few months living with Lewy body dementia. We are hosting an exclusive online event with the film's director Tylor Norwood. Register here:

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Lewy Body Society

@lbsorg

2 years

Just 24 hours until #AScarfForLewy ! The scarves are nearly in London ready to be wrapped around the @RoyalAlbertHall . If you see or hear any coverage please send it to us, in case we miss it 👍

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Lewy Body Society

@lbsorg

2 years

The first session of #ilbd2022 had fantastic contributions from @chris40781 and @KevinQuaid3 who are both #LivingWithLewy body dementia. They speak about their challenging symptoms with such humour and honesty. They are brilliant advocates for living a good life with dementia

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Lewy Body Society

@lbsorg

2 years

We are delighted to announce the successful research projects from our 2022 grant round. 4 fascinating studies that will help us better understand & treat Lewy body dementia 🧠 🧬 A total of £464k has been allocated taking our total since 2007 to nearly £2.2m! 🤩 👏 (1/5)

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Lewy Body Society

@lbsorg

5 years

We’re here and ready for the show! It’s such a privilege for the Lewy Body Society to be involved with this amazing project as the charity partner for @Showtime48Hour

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Lewy Body Society

@lbsorg

1 year

What an amazing visit to @WWLNHS Royal Albert Edward Infirmary on Day 3 of #DottyDay2023 . The Admiral Nurse Service & Dementia Champions working together to raise awareness of #lewybody @MarkOakley20 @MrsTracyKirkham & Jenny @DementiaUK from A&E 💙

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Lewy Body Society

@lbsorg

5 years

Updated guide now available! We’ve refreshed our popular booklet all about Lewy body #dementia . It covers the symptoms, diagnosis and treatment of #LBD and planning for the future. Free for individuals to order and download at

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Lewy Body Society

@lbsorg

2 years

Did you know that you can order a free information pack by emailing : info @lewybody .org with a postal address?

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Lewy Body Society

@lbsorg

10 months

Join us on Sunday, January 28th, as we celebrate the 1st-ever World Lewy Body Day💙 #WLDB #LewyBodyDay

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Lewy Body Society

@lbsorg

5 years

We’re delighted to welcome Rachel Thompson @raheli01 as the first ever Consultant Admiral Nurse for Lewy body dementia. An experienced nurse, author & trainer, she’ll be working to improve care for people with #LBD and support other professionals. More at

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Lewy Body Society

@lbsorg

1 year

People need a diagnosis that includes an accurate recording of dementia sub-type so that appropriate care and support can be provided. This #DementiaActionWeek we are highlighting low levels of diagnosis of #LBD . #DAW2023

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Lewy Body Society

@lbsorg

9 months

This first slide is especially relevant to people with fluctuating cognition of Lewy body dementia. We are also delighted that memory loss not always being the first symptom is acknowledged - with Lewy body dementia, tell-tale sleep issues may occur years before any other signs.

Dementia UK

@DementiaUK

9 months

We recently asked you what one thing you wished people knew about #dementia . Here's what you shared...🤔 Do any of these resonate with you? Share your thoughts and experiences in the comments. 👇

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Lewy Body Society

@lbsorg

1 year

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Lewy Body Society

@lbsorg

4 years

Brilliant online event this evening discussing @RobinFilm with its Director @TylorNorwood and @John_PaulTaylor @raheli01 . We really recommend you watch the film (available on most digital platforms) and know that it will help raise awareness of Lewy body dementia globally 💙

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Lewy Body Society

@lbsorg

3 years

Next year the international Lewy body dementia community returns to the UK for the prestigious #ILBDC22 . Register now and submit your abstract at People living with LBD and carers also welcome - there will be a Living with Lewy strand just for you!

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Lewy Body Society

@lbsorg

8 months

Our founder @LewyLady went viral yesterday! We cannot thank @ruskin147 - and #SophieFromRomania of course - enough for their support. As parkinsonism is a core feature of Lewy body dementia, many people with the disease are misdiagnosed as having Parkinson’s. Find out more:

Rory Cellan-Jones

@ruskin147

8 months

Yesterday this sketch of me and #sophiefromromania by @LewyLady went viral. If you love it as much as I do why not make a donation to the Lewy Body Society raising awareness of a form of dementia often linked to #Parkinsons

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Lewy Body Society

@lbsorg

2 years

We’ve finished collecting scarves and they will now be sorted, measured and sewn together, ready to wrap around the @RoyalAlbertHall . The response has been incredible - thank you! If you can join us on 22nd Sept, register here: #AScarfForLewy

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Lewy Body Society

@lbsorg

9 months

Thank you to Dr Joe Kane ( @QUBelfast ) and Dr Paul Donaghy ( @UniofNewcastle ) for speaking at the Lewy Body Masterclass at the Lewy Body Academy and for your support of World Lewy Body Day. @jpmkane @theneuroacademy #WorldLewyBodyDay #ShiningALightOnLewy

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Lewy Body Society

@lbsorg

8 months

Love this gorgeous sketch of #SophieFromRomania by our founder @LewyLady . Look at her tail: absolutely captured the happiness that her new-found bravery to go out for a walk with the very patient @ruskin147 has given her.

LewyLady

@LewyLady

8 months

@ruskin147

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Lewy Body Society

@lbsorg

3 years

Save the date! #DottyDays is back

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Lewy Body Society

@lbsorg

7 months

We are delighted that @lbsorg has been nominated for the 'Charity of The Year' Award at the Wigan Borough Business Awards. On behalf of everyone living with a diagnosis of Lewy body dementia and their families a heartfelt thank you to everyone that has nominated us, we are very

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Lewy Body Society

@lbsorg

7 months

With neurological conditions now the leading cause of ill-health worldwide it is even more crucial that people with Lewy body dementia get the proper diagnosis so they receive the correct treatment. Around half of all people with Lewy body dementia will have been diagnosed with

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Lewy Body Society

@lbsorg

2 years

Wishing all our followers and your families a very happy Christmas 🎄 It’s been a busy year and we would like to thank all our supporters and partners for working with us to shine a light on Lewy body dementia ⭐️ Read about our highlights of 2022 here:

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Lewy Body Society

@lbsorg

3 years

Hallucinations can be one of the most challenging symptoms of LBD. We're hosting a webinar on Monday (05/07) at which @John_PaulTaylor & @raheli01 will give advice on how to manage them. Register here:

Managing hallucinations and changes in visual perception in LBD

A webinar for people living with dementia and their family/caregivers, with practical tips on how to manage these symptoms

www.eventbrite.co.uk

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Lewy Body Society

@lbsorg

5 years

A huge THANK YOU to the cast, crew, orchestra, @JulianClary and EVERYONE involved with @Showtime48Hour who doubled their target & raised over £20k for @lbsorg

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Lewy Body Society

@lbsorg

9 months

Hallucinations are a key symptom of Lewy body dementia along with sleep issues, fluctuating cognition and Parkinson's symptoms. #LewyBodyDementia #WorldLewyBodyDay

Parkinson's UK

@ParkinsonsUK

9 months

Today is #WorldLewyBodyDay . Lewy bodies are closely linked to Parkinson's, and some forms of dementia. We're funding a study to tackle hallucinations associated with Parkinson's and Lewy Body Dementia. Find out more about the TOP HAT trial 👉🏼

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Lewy Body Society

@lbsorg

9 months

Join us on Sunday, January 28th for #WorldLewyBodyDay to help shine a light on Lewy body dementia and raise awareness of the "most common type of dementia you have never heard of”. #ShiningALightOnLewy #LewyBodyDementia #LewyBodies

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Lewy Body Society

@lbsorg

2 years

Amazing to have Susan Hampshire support us today for #AScarfforLewy

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Lewy Body Society

@lbsorg

3 years

Our @lbsorg info pack includes a copy of our guide book which remains one of our most popular #resources & other leaflets on specific symptoms like Hallucinations. email a postal address to : info @lewybody .org to request your pack. (non UK addresses we can send a PDF version)

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Lewy Body Society

@lbsorg

2 years

We’re thrilled that presenter @AnnRobinsonTV has become the latest supporter of #AScarfForLewy Anne has knitted a scarf to raise awareness of #LewyBody . There’s still time to send us your scarf, which will be joined with others & wrapped around the @RoyalAlbertHall in Sept.

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Lewy Body Society

@lbsorg

3 years

Hallucinations can be one of the most challenging symptoms of LBD. We've published a new leaflet by @raheli01 with tips for people living with #LBD and carers:

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Lewy Body Society

@lbsorg

1 year

Lewy body dementia podcast Whether you are someone who has recently received a diagnosis of Lewy body dementia a friend or family member, this podcast is a valuable resource for anyone looking to find out more about #LBD Thank you to @TNLComFund for their support. @chris40781

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Lewy Body Society

@lbsorg

4 years

What is Lewy body dementia really like? How is it diagnosed and what help is available? Get answers to these questions and many more, and hear directly from @chris40781 who is currently living with LBD, and @raheli01 , on our free webinar next week #letschat #expertbyexperience

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Lewy Body Society

@lbsorg

5 years

Did you know that you can download a copy of our updated handbook from our website or order a copy to be sent in the post?

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Lewy Body Society

@lbsorg

5 years

We are delighted to announce an @lbsorg funded #Admiral Nurse job vacancy hosted by @DementiaUK visit our website for further details #Awareness #research

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Lewy Body Society

@lbsorg

2 years

“The thing about hope is that no matter what, you dust yourself off, you pick yourself up and you go forward. And you don't do that alone." Susan Schneider Williams is a fantastic advocate for Lewy body dementia awareness and research 💙 #dottydays

What Robin Williams’ widow wants you to know about the future of Lewy body dementia | CNN

For Robin Williams’ widow, learning about Lewy body dementia has made her husband’s death make sense. Susan Schneider Williams details the comedian’s final days, and the future of LBD research,...

www.cnn.com

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Lewy Body Society

@lbsorg

3 years

Wishing our Patron Miss June Brown OBE a very Happy Birthday.

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Lewy Body Society

@lbsorg

2 years

Our team - along with carers Kim and Sandra- is in Parliament today talking to MPs and Peers about the impact of caring for someone with Lewy body dementia during the #covid19 pandemic. Along with our #CarersWeek partners we’re calling for a Respite & Recovery Plan for Carers

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Lewy Body Society

@lbsorg

3 years

Thank you to everyone who joined us for our discussion this morning on raising awareness of Lewy body dementia. We were delighted to be joined by @JaneSigaloff who shared the background to her powerful essay about her father’s LBD. Read it here:

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Lewy Body Society

@lbsorg

1 year

What are Lewy bodies? is a book by award-winning author @alexwauthoraimed at children aged 5-11. It explains #Lewybodydementia in a fun & accessible way, to help the younger generation understand this common but little-known disease. …

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Lewy Body Society

@lbsorg

2 years

We are delighted to be attending @alzheimerssoc Annual Conference today with a focus on diagnosis. So important that people receive a correct subtype diagnosis. #DAW2022

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Lewy Body Society

@lbsorg

2 years

Did you know... cognitive changes are one of the things that distinguishes Lewy body dementia from other types of #dementia . Too much focus on memory loss as the main symptom of dementia can mean that cases of #LBD are missed. We are on a mission to change this. #dottydays

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Lewy Body Society

@lbsorg

5 years

A huge thank you to everyone who has supported us during #DottyDays by sharing & liking our tweets, posting their pictures & by fundraising. Your support is greatly appreciated. #Awareness #research #LBD

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Lewy Body Society

@lbsorg

1 year

We are delighted that our ‘Living with Lewy’ podcasts are now live. You can listen via this link: Thank you to @TNLComFund @ITNBusiness and our contributors.

Living with...

shows.acast.com

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Lewy Body Society

@lbsorg

9 months

With less than a week to go until the first World Lewy Body Day, our CEO and driving force @jc_cannon13 has shared her connection with Lewy body dementia and the reason she is fighting tirelessly to shine a light on this terrible disease. #worldlewybodyday #shiningalightonlewy

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Lewy Body Society

@lbsorg

2 years

⭐️ 🧣 New date confirmed for A Scarf For Lewy 🧣 ⭐️ Our awareness raising event (when we will wrap 1 mile of scarf around @RoyalAlbertHall !) will now take place on 14th October 2022. We need more volunteers to help on the day- sign up at #ascarfforlewy

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Lewy Body Society

@lbsorg

4 years

We’re starting a new regular email newsletter about our work, for people living with dementia, carers and relatives, as well as professionals involved in care, support or research. Register today at and please share with friends, family & colleagues!

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Lewy Body Society

@lbsorg

2 years

A huge thank you to the Daisy Chain Stichers from #Wigan who knitted 73 scarves in total for #AScarfForLewy

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Lewy Body Society

@lbsorg

3 years

Happy #InternationalNursesDay and especially to the amazing @lbsorg funded @DementiaUK #AdmiralNurse @raheli01

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Lewy Body Society

@lbsorg

2 years

There is still time to register for the International Lewy Body Dementia Conference 2022. The ‘Living with Lewy’ strand, aimed at people living with dementia and carers, is free to attend and takes place on 15th and 16th June. Register:

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Lewy Body Society

@lbsorg

1 year

Lewy body dementia is the most common dementia that you have never heard of & is often misdiagnosed. Do you know how to recognise it? How to support that person and their family once you have? Develop your expertise & increase your confidence: #LewyBodyMC

Lewy Body MasterClass 3 | Neurology Academy

neurologyacademy.org

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Lewy Body Society

@lbsorg

1 year

Delighted to be one of the seven charities supporting #CarersWeek2023 . A huge thank you to all the team at @CarersUK

Helen Walker

@Helen_M_Walker

1 year

Delighted to take #UnpaidCarers to Downing Street this afternoon to mark #CarersWeek and discuss the challenges of caring. Thank you to @Helen_Whately for hosting and listening @CarersUK

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