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News 2017

2017 news from SHA…

Charity launches new young person’s guide to Huntington’s disease

The Scottish Huntington’s Association Youth Project (SHAYP) has launched a new range of literature designed to support children and young people living in families impacted by the degenerative neurological condition, Huntington’s disease (HD).

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Research reaches ‘knife edge’ in quest for HD treatment

One of the world’s leading researchers into the degenerative neurological condition Huntington’s disease (HD) said research into treatments for the condition was now on a ‘knife edge’.

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Renfrewshire group raises £1500 for local charity

A support group for an incurable neurological condition put their best foot forward and raised £1500 to help support people living with the disease.

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Canadian comedian to front Paisley fashion fundraiser

Canadian comedian Katharine Ferns is set to call out the catwalk at a charity fashion fundraiser in aid of the Scottish Huntington’s Association (SHA). Katharine will host the ladies night event at Paisley Town Hall on November 2 to raise money to help families living with the degenerative neurological condition, Huntington’s disease (HD). Fashion show models will showcase clothes from local boutiques and fashion stores.

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Global Huntington’s disease patient Advocacy organisations unite

The European Huntington Association (EHA), Huntington’s Disease Society of America (HDSA) and Huntington Society of Canada (HSC) are proud to announce the formation of the Huntington’s Disease Coalition for Patient Engagement (HD-COPE), in an effort to give families who are affected by Huntington disease (HD) a direct and impactful voice in HD clinical research.

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New support platform for neurological condition

A new advice forum specifically designed for carers living in Huntington’s disease (HD) families has been launched.

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Fifty Percent

We are looking for supporters to download John Eden CEO (Kindle Edition Book).

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Tayside treasure hunt for Huntington’s disease

Scotland’s leading neurological charity is calling on Tayside families to look out their map and compass for a fundraising treasure hunt. Organised by the Scottish Huntington’s Association, the only charity in the country supporting families living with the degenerative condition Huntington’s disease (HD), it will take in some of the most stunning scenery in the country.

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300 Three Peaks Challenge scottish huntingtons association sha snowdonia

Edinburgh team conquers Three Peaks charity challenge

A seven strong expedition led by Edinburgh solicitor Lucy Frazer, laced up their boots and took on the Three Peaks Challenge to raise money for the fight against the degenerative neurological condition Huntington’s disease (HD).

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Daredevils wanted for Falkirk Wheel abseil

Fundraisers with a head for heights are being asked to step of the Falkirk Wheel to help raise money for the Scottish Huntington’s Association (SHA). Volunteers are wanted to abseil down the 135 foot structure to help out the only charity in Scotland that supports families living with the degenerative neurological condition Huntington’s disease (HD).

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300x250 sha scottish huntingtons association Jeans-for-Genes-Day-logo-5050_v2

Great news from Jeans for Genes!

In good news, SHA can celebrate this month after receiving the news we will be given a grant from Genetic Disorders UK, the national charity that organises the annual fundraising day, Jeans for Genes Day.

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Neurological charity on lookout for volunteers

The only charity in the country supporting families living with the degenerative neurological condition Huntington’s disease (HD) is on the lookout for volunteers.

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valerie Gillies SHA Scottish huntingtons association light beyond hd shadow

Writing About HD – The Light Beyond The Shadow

We are delighted to announce the upcoming launch of our second annual writing competition: Writing About HD – The Light Beyond The Shadow.

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Pope welcomes Edinburgh Huntington’s disease ambassador

An ambassador for the Scottish Huntington’s disease (HD) community has met with Pope Francis to raise awareness of the condition. Part of a worldwide HD delegation meeting his Holiness, University of Edinburgh research assistant, Dina De Sousa led a delegation from the Scottish Huntington’s Association (SHA) to the Vatican.

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World’s first National Care Framework for Huntington’s disease launched

Cabinet Secretary for Health and Sport announces £60,000 boost for additional year’s work An event in the Scottish Parliament
marking the formal launch of the National Care Framework for Huntington’s Disease (HD) has welcomed a £60,000 boost that allows the project to continue into its next phase of local implementation..

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scottish huntingtons association awareness week light up for hd

Kelpies shed light on Huntington’s disease

Falkirk’s iconic Kelpies lit up to highlight the worldwide fight against the degenerative neurological condition Huntington’s disease (HD) this week. Part of HD Awareness Week the Kelpies joined a host of prominent buildings around the world, including First Direct Area in Leeds and the BC Place stadium in Vancouver Canada as well as the Titan Crane in Clydebank in the international HD colours of purple and blue to show support for families
affected by the condition.

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titan crane to light up for hd awareness scottish huntingtons association

Titan Crane lights up to support Huntington’s disease families

Clydebank’s iconic Titan Crane is to be lit up to highlight the fight to find a cure for the degenerative brain condition Huntington’s disease (HD) on May 15. The Titan Crane will join the Kelpies in Falkirk and a host of prominent buildings around in the world, including Niagara Falls, Mansion House in Dublin and Barcelona’s Grand Plaza, illuminated in the international HD colours of purple and blue to show support for families affected by the condition.

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The Trendies Scottish huntingtons association SHA charity

Perth punk rockers release first album – 40 years late

Forty years after splitting up, Perth’s punk prodigies The Trendies, have released their first album, all to help the band’s former singer now living with the degenerative brain condition Huntington’s disease (HD). The band were a regular feature on the Scottish punk scene in the late seventies…

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fifty percent novel scottish huntingtons association

Charity chief is bidding for book success

The head of one the country’s leading neurological support services has written a book, and if it’s published all his royalties will be donated to his charity. John Eden, chief executive of the Scottish Huntington’s Association, first novel Fifty Percent? is the story of three women from three generations who are impacted by one secret, Huntington’s disease (HD).

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scottish huntingtons disease high school of glasgow bush tucker

Good cause makes bush tucker ordeal easier to swallow

There was a variation on the lunch menu at the High School of Glasgow recently when senior pupils organised a ‘bush tucker trial’ to support people living with the degenerative neurological condition Huntington’s disease (HD). The creepy crawly feast was just one of a series of fundraising events organised by the school’s Law House that raised over £4453 for the Scottish Huntington’s Association, the only charity in the country supporting families living with HD.

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New support platform for neurological condition

A new advice forum specifically designed for carers living in Huntington’s disease (HD) families has been launched. Set up by the only charity in the country supporting families living with degenerative neurological condition, the Scottish Huntington’s Association, the online forum provides out-of-hours help and advice for anyone who needs support with any aspect of the condition.

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Bloggers wanted for health charity

The only charity in Scotland supporting families with the degenerative neurological condition Huntington’s disease (HD) is on the look out for volunteer bloggers. The Scottish Huntington’s Association (SHA) wants to expand its awareness raising activities and sees a regular blog on HD related issues as an important new platform.

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Charity laughs as part of Glasgow Comedy Festival, March 24th

Raising some laughs and hopefully some cash, the Scottish Huntington’s Association SHA is hosting a charity gig as part of the Glasgow Comedy Festival this week. Headliner for the show at Broadcast on Sauchiehall Street this Friday (March 24) is multi comedy award finalist Ross Leslie. Edinburgh based Ross has been leaving stand up audiences in stiches with his tales of raising his four children with his patient wife and also with his hit show ‘Oh no he didn’t’.

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Charity laughs as part of Glasgow Comedy Festival, March 17th

Raising some laughs and hopefully some cash, the Scottish Huntington’s Association SHA is hosting a charity gig as part of the Glasgow Comedy Festival this week. Leicester Square New Comedian of the Year 2016, Joby Mageean, headlines at Broadcast on Sauchiehall Street this Friday (March 17).

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Charity scores top marks in satisfaction survey

According to a new survey the Scottish Huntington’s Association makes a ‘significant difference’ to the lives of people living with the degenerative neurological condition Huntington’s disease (HD).

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Lower suicidal thoughts among Scottish HD patients

People living with the degenerative neurological condition Huntington’s disease (HD) in Scotland are less likely to think about taking their own life according to a snapshot study.

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Huntington’s disease: From witch hunts to global waypoints in integrated care

The Salem witch trials of the late seventeenth century are notorious, but their connection with a devastating neurological condition is less well known.

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New fact sheets increase Huntington’s disease understanding

New fact sheets highlighting help and advice for anyone diagnosed with the degenerative neurological condition Huntington’s disease (HD) have been launched.

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