Huntington's Disease Association

Huntington's Disease Association is a registered charity that supports people affected by #HuntingtonsDisease (HD) in England and Wales. #MindfulOfHuntingtons

[Huntington's Disease Association @HDA_tweeting]

Thank you to Becca Martin MS for meeting us to talk about improving access to mental health services and the importance of a single point of contact for people with Huntington's and other neurological conditions, and for offering to follow up with the Welsh Government

[The Neurological Alliance @NeuroAlliance]

As we welcome @YvetteCooperMP, the new Secretary of State for Health and Social Care, if you're able, please make sure you've added your name to our open letter calling for a national plan for neuro. Add your name here: https://t.co/MwDyiAAVk5 Thank you

[The Neurological Alliance @NeuroAlliance]

Show your support for a national plan for neurological conditions now. If you are able, please sign our open letter to the Secretary of State for Health and Social Care here: https://t.co/w33q60NPo7 Thank you. Anyone in the UK can sign and show their support.

[Huntington's Disease Association @HDA_tweeting]

Thank you Gwyn Williams MS and Safa Elhassan MS for meeting us to discuss mental health services and care coordination for people with Huntington's in Gwyr Abertawe, and for your offers to follow up on our behalf

[Huntington's Disease Association @HDA_tweeting]

At least 1 in 6 people in England has a neurological condition. The Government's neighbourhood health programme must work for people with complex, long-term conditions, including neurological conditions. Learn more about https://t.co/t21R7WjFGx

[Huntington's Disease Association @HDA_tweeting]

🧘 Join our seated yoga session with Amanda Turner.

This gentle 15-minute practice is designed to support your wellbeing and can be done from the comfort of a chair. https://t.co/Xoqva9oDc1

[Huntington's Disease Association @HDA_tweeting]

People living with Huntington’s disease on the highest rates of PIP should not face anxiety-provoking, unnecessary reassessments — but too many still do.

This has to change.

Read our response to the government’s PIP review here: https://t.co/lEssGWJ9PO

[⛰️🌳🐈‍⬛ CathArtic 🐈🐓🫖 @MumbrianSpinner]

@oujibob @mndassoc When people ask for keyrings, I always only want donations to @HDA_tweeting or @mndassoc
It's massively important we support them.

[Huntington's Disease Association @HDA_tweeting]

Thank you Peredur Owen Griffiths MS @PeredurPlaid for taking the time to meet us to talk about mental health services and care coordination for people with Huntington's in Casnewydd Islwyn and throughout Wales, and for offering to follow up with the Welsh Government

[Huntington's Disease Association @HDA_tweeting]

A person with Huntington’s disease may seem reluctant to join in activities due to changes in the brain that affect motivation and initiative. It’s not laziness or a lack of interest. Understanding this can help families offer the right support. Here are some tips. 💚

[Huntington's Disease Association @HDA_tweeting]

Thank you @Lynne_Neagle MS for meeting us to discuss care coordination support and access for people with Huntington's to mental health services in Sir Fynwy Torfaen and across Wales, and for agreeing to follow up with the Welsh Government on these issues

[Huntington's Disease Association @HDA_tweeting]

@MMYang434 @hughlaurie @jan_murray And it's very rare to see someone with Huntington's disease portrayed on the TV

[The Neurological Alliance @NeuroAlliance]

We're proud to join @DementiaUK and other charities including our brilliant members @ParkinsonsUK @MDUK_News @HDA_tweeting @mndassoc @Britishpolio in calling on the Health Secretary to fix NHS continuing health (CHC) once and for all.

Sign the petition

https://t.co/uYp2p6HcfA

[Dementia UK @DementiaUK]

NHS continuing healthcare (CHC) can be a lifeline for people with dementia.

But too many families face a process that’s confusing, inconsistent, and unfair.

As part of our #FixTheFunding campaign, we’re joining 11 other charities calling on the Health Secretary to fix NHS CHC.

Sign the petition: https://t.co/7HVQrGNT9n

@Britishpolio @CarersUK @DemCarersCount @HDA_tweeting @lbsorg @ParkinsonsUK @mndassoc @MDUK_News @NeuroAlliance @spinalinjuries @tide_carers

[Huntington's Disease Association @HDA_tweeting]

As #AwarenessMonth comes to an end we're sharing what our Community wishes professionals knew about Huntington's disease

[Essex Contingent @jeremychipp1]

Stanley family without you & immediate family battling @HDA_tweeting for Mrs Contingent life would be very hard so lovely seeing her smile so much in Rhodes thanks to all hotel Tui blue Lindos bay & James from uncharted escapes today thank you for making memories

[Helen Grant OBE MP @HelenGrantMP]

Following a recent meeting with the Huntington's Disease Association, I was delighted to host them in Parliament last week.

The event marked the launch of their report on care coordination, entitled 'Support at every step: Improving care coordination for people living with Huntington's disease'.

There are at least 8,000 people in the UK living with Huntington's disease, with a further 32,000 at risk. Because it is hereditary, with each child of an affected parent carrying a 50% chance of inheriting it, the condition ripples across entire families and generations.

People with Huntington's disease need a dedicated care coordinator, yet too many are left without one. Research shows care coordinators are present in only 40% of English counties, and where professional support is absent, family members are pressured to fill the gap themselves, increasing the risk of crisis care.

People with access to a care coordinator report a much better care experience which makes the current postcode lottery all the more unacceptable. Decision-makers must act now to make coordinated care universal, especially as new treatments bring fresh hope to those affected.

Anyone in Maidstone and Malling who is affected by Huntington's disease can ask for support from the Huntington's Disease Association locally: https://t.co/2KbWmm9Yrw

@HDA_tweeting

[Huntington's Disease Association @HDA_tweeting]

We are in Portcullins House today talking to MPs about improving care coordination for people living with Huntington’s disease #BehindTheGene

[Huntington's Disease Association @HDA_tweeting]

In a single moment, she realised her mother-in-law had it, her husband Tracy could have it, and their two-year-old daughter has a 50/50 chance of inheriting it. What happened next would define the next 25 years of her life.

Read Susan's story below: https://t.co/rV2NJI7usq

[Huntington's Disease Association @HDA_tweeting]

"My heart stopped. Three generations in a flash, literally within that day."

Susan was sitting with her mother-in-law at a routine doctor's appointment when she first heard the word Huntington's disease.