2016 news from SHA…
Christmas wish comes true for Scottish Fundraiser of the Year
Kingdom FM sprang a massive surprise on Aidan McCallum yesterday after his mum nominated him for a Christmas Wish.
BBC Alba on the lookout for HD case study
BBC Alba is working on a documentary ‘The Gene Test’ that seeks to raise awareness of the work of Scotland’s Clinical Genetics Service.
Linda is on top of the world after Himalayan trek experience for charity
Intrepid Linda, 49, journeyed with two pals to the spectacular mountain range in Nepal, and raised more than £7,000 for Scottish Huntington’s Association (SHA) and Diabetes UK.
SHAre Magazine Winter 2016 published
The Winter 2016 edition of SHAre Magazine has been published. Click below to view or download for future reading.
Financial advice secures £1 million for Huntington’s disease families
A new financial advice service has secured families living with the degenerative brain disorder, Huntington’s disease (HD), more than £1 million in extra income.
SHA launch webstore to boost fundraising!
It’s been over six months since we launched our new website and since then our team has been working hard to further improve its functionality.
Claire’s story highlights Huntington’s disease
A Glasgow writer has become the first winner of a short story competition to raise awareness of the degenerative neurological condition Huntington’s disease (HD).
World renowned scientist in Falkirk for Huntington’s disease update
One of the world’s leading researchers into the degenerative neurological condition Huntington’s disease (HD), was in Falkirk to update families living with the condition on progress towards effective treatments.
Writing out of the HD Shadow – The winning entries
After receiving 127 entries to our flash fiction competition ‘Writing out of the HD shadow’, the three winners have now been chosen.
Paula makes a splash for Huntington’s disease awareness
Novice open water swimmer Paula O’Hare dived in at the deep end to raise £2361 for a charity that supports families living with the degenerative neurological condition, Huntington’s disease (HD).
Huntington’s disease care gaps still exist
Large areas of Scotland are still missing out completely on vital specialist health and social care support, according to the Scottish Huntington’s Association (SHA).
Finn’s is the place for Southside charity gig
Fresh from rave critical reviews of their new album ‘Dangerous Minds’, central Scotland four piece the Media Whores are taking time out to play a charity fundraiser for Scottish Huntington’s Association (SHA).
Hamilton Rugby Club Raise Awareness of Huntington’s Disease
Hamilton Rugby club continues to support the local community with its vast rugby development programme.
Falkirk Wheel abseil raises £10K for neurology charity
Fundraisers with a head for heights stepped off the edge of the Falkirk Wheel and raised more than £10,000 for the Scottish Huntington’s Association (SHA).
Paisley Patron is UK charity champion
Patron of Paisley’s Scottish Huntington’s Association (SHA), Sarah Winckless, has been crowned UK charity champion by the ScottishPower Foundation.
Summer prize draw, we have a winner!
We’ve been blown away this summer by the response to our summer prize draw and the number of people who wanted to sell tickets on our behalf to help raise money.
Annual Report 2016
Our annual report for 2015/2016 has just been published. It shows an interesting overview of SHA, fundraising, national care framework, highlights and much more.
SHAre Magazine Summer 2016 published
The Summer 2016 edition of SHAre Magazine has been published. Click below to view or download for future reading.
SHAYP awarded funds for 2017 Summer Camp
SHAYP has been awarded £18,000 for its 2017 Summer Camp at Lagganlia Outdoor Learning Centre.
Abseil down the Falkirk Wheel for brain charity
Volunteers with a head for heights are wanted to help raise funds to fight an incurable brain disorder.
The Scottish Huntington’s Association still has places for an abseil down the Falkirk Wheel on September 3 to raise funds to help support its work with families living with Huntington’s disease (HD).
Headlines detract from the real impact of Huntington’s disease
News that 1:400 people may now be at risk of the degenerative brain condition Huntington’s disease (HD) made some alarmist media headlines recently.
The study was carried out by the University of Aberdeen working with colleagues from the University of British Columbia and the Coriell Institute for Medical Research. It was the first study to look at the numbers of people with the genetic change that causes HD. The results surprised researchers because they suggested the number of people who might have or go on to have HD is much higher than the current 1:5,000 prevalence.
New study shows higher number of people may be at risk of HD than previously thought
The gene that causes the devastating brain disorder, Huntington’s disease (HD) could affect more than 10 times as many people than previously thought, according to new research.
Scientists from the University of Aberdeen, the University of British Columbia and the Coriell Institute for Medical Research found that as many as 1 in 400 people could be at risk of developing the condition. Previously it was thought HD affected around 1 in 5000 of the population.
Charity urging businesses to adopt a Huntington’s Hut
A charity that supports families living with a degenerative brain disorder is urging businesses to help them raise funds by adopting a Huntington’s Hut. The Scottish Huntington’s Association want businesses to host a cardboard hut that can be filled with unwanted goods which, can then be sold sell on through the charity’s ebay shop.
Leading Scottish authors join forces to fight Huntington’s disease
Two leading lights in the Scottish literary scene are joining up to raise awareness of the degenerative brain disorder Huntington’s disease (HD). Alan Bisset and Michael Malone have signed up to judge a short story competition ‘Writing out of the HD shadow’ that will explore the devastating impact the disease has on families.
Garfield Weston Foundation Supports Scottish Huntington’s Association HD Services
Scottish Huntington’s Association was delighted to receive £10,000 recently from the Garfield Weston Foundation to assist with the growth and development of its HD Adult Clinical Services across Scotland.
Long distance runner puts best foot forward for Huntington’s disease
Kenny Train from Danderhall, Midlothian took on his toughest endurance test yet to raise money and awareness for families living with an incurable brain condition. Kenny completed a gruelling coast to coast 85 mile run from Inverness to Skye raising £2,500 for the Scottish Huntington’s Association (SHA).
Marathon effort rewarded with £6K donation
Families living with the degenerative brain condition Huntington’s disease (HD) have been given a boost after two childhood friends from Laurencekirk completed the Virgin London Marathon.
M&S checks out an impressive charity total
Generous shoppers and staff at the Newton Mearns branch of Marks & Spencer donated an impressive £1633 to help support families living with the degenerative brain condition Huntington’s disease (HD).
Kelpies light up to support Huntington’s disease families
Falkirk’s iconic Kelpies lit up to highlight the fight to find a cure for the degenerative brain condition Huntington’s disease (HD) last week.
Bankhouse scores a winner for Paisley charity
Generous staff and customers from Paisley’s Bankhouse pub kicked off a full day of fundraising with a football match and at the final whistle raised more than £1000 for a local charity.
Video Postcard from 2016 HD Therapeutics Conference
Each year the HD Therapeutics Conference put together a video postcard to convey to patients and families some of the major themes from the conference that are most relevant to them.
Charity Patron shortlisted for top Scottish award
Patron of the Paisley based Scottish Huntington’s Association (SHA) has been shortlisted for a top honour at the Scottish Charity Awards.
Jet, set, GO!
Summer looks to be just around the corner and in Scotland we can’t wait for the day. In preparation for this we’ve been talking to some lovely people to get prizes to run our summer campaign.
SHAre Magazine Spring 2016
The new edition of our SHAre Magazine is ready now. Click through to read all about recent happenings at the Scottish Huntington’s Association in the Spring 2016 magazine.
Neurology charity joins the living wage community
Neurology charity the Scottish Huntington’s Association (SHA) is the latest organisation to achieve living wage accreditation. The Paisley based charity, which supports families with degenerative neurological condition Huntington’s disease (HD), joins a list of around 2200 companies and organisations across the UK which have now been accredited after pledging to pay all employees a living wage.
New advice team secures £610k for brain disorder families
A new financial advice service has secured families living with the degenerative brain disorder, Huntington’s disease (HD), an extra £610K of income. The Scottish Huntington’s Association’s three strong Financial Wellbeing team was set with help from the Big Lottery Fund a year ago and since then has worked with more than 250 families securing extra benefit income of around £2500 per family on average.
Genetic discrimination a barrier to equality says charity chief
One of the country’s leading neurological support charities claims that genetic discrimination is one of the the last barriers to equality.
John Eden, chief executive of the Scottish Huntington’s Association (SHA), the only charity supporting people living with the degenerative brain condition Huntington’s disease (HD), said he was aware of several cases of people from HD families being refused life insurance and denied career opportunities based on their genetic status.
SHA backs calls for improved neurological care
The Scottish Huntington’s Association (SHA) is backing a new campaign to improve care standards for people living with neurological conditions.
Charity Pops-Up Again in Coupar Angus!
A week long pop-up store will be opening again this coming Sunday 21st February in Couper Angus, North Perthshire.
Now in it’s eighth year, the pop-up charity shop will open its doors once more to the public with the intentions of raising much needed funds in support of HD services around Scotland.
Rewrite the Future
According to a recent parliamentary question, the Scottish Government does not know how many people in Scotland have a condition affecting their brain or nervous system. This means they don’t know where people with neurological conditions including brain injuries, multiple sclerosis, Huntington’s disease and motor neurone disease live, or what services are available for them.
Sue Ryder are campaigning for MSPs and Scottish Parliament candidates to rewrite the future for people with neurological conditions in Scotland.
Laurencekirk duo team up to support brain disease charity
Two childhood friends from Laurencekirk have signed up for the Virgin London Marathon to raise money to help fight an incurable brain disorder.
Dionne Winter and Julie Ann Marshall are now in training for the April race on behalf of the Scottish Huntington’s Association
The pair will be running to support the work the charity does to help families living with the degenerative brain condition Huntington’s disease (HD).
Fife MP lends support to Huntington’s disease youth project
Kirkcaldy and Cowdenbeath MP, Roger Mullin, has highlighted the work of the Scottish Huntington’s Association Youth Project (SHAYP) at Westminster.
SHAYP supports around 150 young people from all over the country living in families affected by the degenerative brain condition Huntington’s disease (HD).
The early day motion presented to Parliament attracted 27 signed supporters and acknowledges the valuable work the SHAYP team does to help young people understand HD and the implications the disease may have for them.
Charities switch on to new fundraising opportunities
Two Renfrewshire charities are switching on to a new way of raising much needed funds – and helping the environment while they are at it.
Lochwinnoch based Local Energy Action Plan (LEAP) and Paisley’s Scottish Huntington’s Association (SHA) have been gifted 4000 energy saving lightbulbs which they are now selling to generate income.
Big Apple race benefits Scottish brain charity
A first time marathon runner from Edinburgh took to the streets of New York to raise funds for the Scottish Huntington’s Association (SHA).
Lisa Carrigan (33) has now totalled her funds from the race back in November and has collected £1800 for the charity to help support families living with the degenerative neurological condition, Huntington’s disease (HD).
The Scottish Huntington’s Association (SHA) Avengers or the ‘SHAVENGERS’ for short is a team of superheroes taking part in a series of challenge events to raise both money and awareness to support families living with Huntington’s disease (HD) in Scotland. You can get involved too!
Tone up and raise funds to support Ayrshire brain disorder families
Fitness fanatic Carol Dick is looking for people to help her run, jump and dance her way to raising much needed funds for the Scottish Huntington’s Association (SHA).
Carol has organised a charity ‘Fitathon Fundraiser’ on February 13 at Kilmarnock’s Grand Hall 10-2pm with four great classes – Movin&Givin, Dance4orceFitness and Fierce Fitness. All will be on offer across the course of the morning and the £10 entry, if you’re up to it, allows access to all four classes. There’s also raffle tickets and a goodie bag thrown in for the entry fee.
National Care Framework Lead appointed
The Scottish Huntington’s Association has appointed a National Care Framework Lead. Alistair Haw joins SHA from Prostate Cancer UK, where he led the charity’s award winning communications and public affairs work in Scotland.
SHA Support for national “Year of Listening” campaign
Our long term partner, Breathing Space, has launched 2016 as Scotland’s ‘Year of Listening’ (YoL) to raise awareness throughout 2016 that listening, and being listened to, is good for your mental health.
Our Chief Executive, John Eden, has written a guest blog about the importance of listening in the context of living with Huntington’s disease.
Royal honour for Paisley charity’s Patron
Olympic champion rower and patron of Paisley’s national charity, the Scottish Huntington’s Association, Sarah Winckless has been made MBE by the Queen. Olympic rower Sarah Winckless was awarded an MBE during the ceremony.
Click HERE to view our news articles from 2015.