Victoria Wareham @v_wareham
Director of Operations and Development @DystoniaUK on a mission to give hope and support to everyone living with dystonia and raise awareness. Views are my own. Joined January 2021-
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Incredibly proud to attend the Parliamentary Neuro Reception today on behalf of @DystoniaUK & @NeuroAlliance. A great chance to talk to MPs about challenges the dystonia community face & the overlap with other conditions, ensuring as many MPs as possible speak up on these issues.
If you believe, like we do, that everyone deserves access to the right care, treatment and support at the right time, no matter who you are or where you live then ask your next MP to become a #NeuroChampion now: bit.ly/NeuroChampion #Dystonia #DystoniaUK #BackThe1in6
Over 50 charities have joined together to write to the Secretary of State for the Department of Health and Social Care about how people affected by a neurological condition struggle to access mental health services.
To mark the start of #DystoniaAwarenessMonth, last night landmarks across the UK lit up in green. #Dystonia is a neuro condition causing uncontrollable muscle spasms. #DystoniaMatters because it affects ~100,000 people in the UK & has no cure. Learn more dystonia.org.uk
September, simply the start of Autumn for most, but for me it’s the start of Dystonia Awareness Month. Lack of awareness can lead to long journey times for diagnosis, isolation and stigma. So please, if you don’t know what dystonia is watch this short video to find out!
What is #Dystonia? The most common question we get asked & one of the reasons #DystoniaAwarenessMonth is still so important today. Learn more or find support ---> dystonia.org.uk #DystoniaUK #MovementDisorder #NeurologicalCondition #DystoniaAwareness
Invite your MP: on 5 June we’re handing in the #BackThe1in6 petition and holding an event in Parliament. Help make sure as many MPs as possible come and show their support for people affected by neurological conditions. Learn more here bit.ly/3pYRmHN
We #BackThe1in6. Will you? Join us in calling on all UK Governments to work together to create a Neuro Taskforce and improve services for the one in six people in the UK living with a neuro condition. Sign & share our petition now. Follow this link: tinyurl.com/BackThe1in6
I've signed the @NeuroAlliance petition, calling for UK governments to urgently establish a Neuro Taskforce. tinyurl.com/BackThe1in6 #BackThe1in6 This is a hugely valuable piece of work I’ve been involved in for @DystoniaUk with @NeuroAlliance and others. Please support and sign!
Great to dust those January cobwebs away with a sunny afternoon work walk/call with @littleblue_d #TheseBootsWereMadeForMuddyPuddles
So proud of all the work behind the scenes from the @DystoniaUK team that has gone into launching this. Huge thanks for all their hard work & support! Thanks to @Add2beeCreative too for being amazing as always!DonateOnePound.org #JustOnePound #DystoniaUK #DystoniaCommunity
DonateOnePound.org We’re asking YOU to donate just £1 today to help support the dystonia community. If everyone in the UK thought to be affected by dystonia donates just £1 we can reach £100,000 by the end of the year. #JustOnePound #DystoniaUK #DystoniaCommunity
Today’s the day, #MyNeuroSurvey has launched! In 2019 over 10,000 people with neurological conditions including over 500 with dystonia. Hoping even more take part this time around so we can continue to fight for what’s important for people living with dystonia. #DystoniaMatters
#MyNeuroSurvey the largest survey of people with neuro conditions has launched! It takes 20 mins & anyone in the UK with dystonia can take part. Share your experiences to help to improve services & care for people with dystonia & to make #YourVoiceHeard. myonlinesurvey.co.uk/myneuro/?DYS
Another day, another corner of Kent! Beautiful drive up to Maidstone and a great meeting with our fantastic group coordinator here. Feels like @DystoniaUK’s September #TeamOnTour all over again!
Really nice to make the most of my temporary living situation with a Folkestone (Kent) meet up with the @DystoniaUK team today. Exciting campaign planning in the works...!
@TheBrainCharity @DystoniaUK Was great to visit, thanks for having us. Looking forward to sending you our updated information resources next!
Misty morning walks today. Every mile matters for @DystoniaUK’s #DystoniaAroundTheWorldChallenge. #DystoniaMatters #MochiAndMe
And just like that #DystoniaAwarenessMonth is over. 9 cities for #TeamOnTour, 1 #DystoniaMatters, 100 miles for #DystoniaAroundTheWorld, 1 live #ReachOutReachAll webinar, 2 lit up landmarks, 1 #DystoniaAnimated ep launched & 3 amazing colleagues helping make this & more happen!
So proud to see this out in the world! #DystoniaAnimated was created by @DystoniaUK to help support kids, carers & families living with dystonia navigate all aspects of life. Bought to life so beautifully by @Add2beeCreative episode 2 captures how super support squads are made!
We're delighted to bring you #DystoniaAnimated Ep2! Ep1 "Dani explains dystonia" had 630,000 views worldwide! "Charlie at the children's hospital" joins Charlie on a visit to the hospital & takes a glimpse into his home life. Full Ep available: dystonia.org.uk/dystonia-anima… #Dystonia
Wishing all the incredible @LondonMarathon runners today the best of luck! Special thanks to the fantastic team of @dystoniaUK team of runners taking on the challenge too! Will be virtually cheering you all on! #TeamDystoniaUK #DystoniaAwarenessMonth #NeurologicalCondition
Next stop... Wrexham! Super impressive seeing @IpsenGroup’s building lit up in our iconic dystonic green for #DystoniaAwarenessMonth. Special thanks to our taxi driver / star photographer for capturing so many shots of me and @littleblue_d representing @DystoniaUK. #TeamOnTour
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