Olympic rower and patron of Paisley’s national charity, the Scottish Huntington’s Association (SHA), Sarah Winkless and supporters have raised more than £10,000 through a series of charity fitness challenges. Sarah has been leading a ‘SHApe Up with Winckless’ campaign throughout 2015 and along with her fellow fundraisers have completed a tough mudder, a Paristo Geneva cycle ride and Yorkshire’s three peaks climb among other challenges over the course of the year.Read More »

The Board of Trustees of SHA have recently been considering the welfare grant scheme operated by Family Branches
of the charity. It is clear that this scheme is a valuable source of financial support. The scheme is only accessible to
individuals living within a branch area (except in a few exceptional circumstances) and the Glasgow branch is currently not
in the position to offer grants. The board have therefore decided to complement the scheme with a National Welfare Grant
Scheme. The scheme will have an initial total fund of £10,000. The scheme will be available to individuals living with HD
(people with symptoms, carers and young people) who meet the following criteria.Read More »

Two of Scotland’s leading contemporary poets are making guest appearances at a special St Andrew’s Day reading in Glasgow this month. William Bonar and Tom Leonard are headlining a night of Scottish poetry and song on behalf of the Scottish Huntington’s Association (SHA).Read More »

Scottish Huntington’s Association is urging young people to switch off their mobile phone for 24 hours to raise awareness of work ongoing to find a cure for Huntington’s disease (HD).Read More »

Fife SHA specialist nurses Jillian Foster (right) and Nicola Johns with conference speaker Joyce Kinnear (centre). The annual meeting of the Scottish Huntington’s Association, the only charity in the country supporting families living with the condition, attracted 150 people to the Fife venue to hear the latest on research and care standard improvement as well as getting a chance to share experiences.Read More »

A 13-year-old pupil from Auchmuty High School in Glenrothes has been named Scottish Volunteer Fundraiser of the Year. Aidan McCallum, who has raised more than £9,000 for the Scottish Huntington’s Association (SHA), picked up the award at the Institute of Fundraising Scotland awards in Glasgow. Aidan, whose dad has Huntington’s disease (HD), said he was motivated to fundraise by the excellent support that the charity has provided to his family.
 
He has raised the money through a series of events from sponsored walks to race nights. However, the budding artist also impressed the awards judges by auctioning off his own work to raise money for charity. One piece was sold for £2,500, that on that occasion went to respite centre Leuchie House.Read More »

A new financial advice service has secured families living with the degenerative brain disorder, Huntington’s disease (HD), an extra £150,000 in benefits. The Scottish Huntington’s Association’s three strong Financial Wellbeing team was set with help from the Big Lottery Fund six months ago. Since then they have worked with 150 families securing on average an extra income for them of over £1000. The SHA is the only charity in the country supporting HD families.Read More »

Despite torrential conditions 14 determined walkers from the Renfrewshire Huntington’s disease support group put their best foot forward to raise £1,800 to help support people living with the degenerative brain condition. The funds will go to help the work of the Scottish Huntington’s Association (SHA) the only charity in the country supporting families living with the disease. The group braved the elements to complete the walk around Erskine last month. The Renfrewshire Support Group was set up by Margaret Moncrieff from Houston who organised the walk.Read More »

Well, now you can! We have a new amazon wishlist of lots of things that would help our SHAYP team support young people coping with HD. Every single thing on the wishlist is something that the SHAYP team have picked, from really little items such as plastic cups and paper plates (essential for occasions such as our residential weekends) to a model of a brain that can help SHAYP staff explain Huntington’s simply and concisely.Read More »

In October we will be launching Handover for Huntington’s. This is about donating anything that you don’t want or need anymore, which we could sell on our ebay online store to raise funds to fight Huntington’s disease. We’ll be happy with old books, DVDs, computer games, phone handsets, knick knacks or even clothes (if you’ve not worn them – we don’t have the facilities to launder worn clothes so can’t accept them), all donated via one of our sturdy Handover for Huntington’s Huts.
 
Our beautifully decorated cardboard boxes would brighten up any office or community centre. We need YOU to find one of our huts a home. It can be anywhere people gather; your church hall, your office, your children’s school. Just let us know where it needs to go and we will get it straight there, ready to receive donations. To let us know that you can help, either email Sally or call her on 0141  848 0308. We are look forward to hearing from you all!

Our latest Annual Report on the many and widespread activities of the Scottish Huntington’s Association. Beyond merely financial information on the income and expenditure of the charity, the Annual Report provides a wealth of examples of how our services are supporting families affected by Huntington’s disease across Scotland.   There is important news of the development of the innovative National Care Pathway for HD as well as real-life examples of how SHA is continuing to work together with HD families to both increase their quality of life and raise awareness of this devastating condition.

Always a great read, another exciting issue of our very popular SHAre Newsletter
– crammed full of news, updates, reports and items of interest about SHA, the Scottish HD community as well as news from
further afield.   This issue has a marvellous lead item on our March on the Scottish Parliament to call for better care for
those affected by HD along with uplifting photographs of those who were able to participate at the event. SHAre Magazine
– Summer 2015

You are cordially invited to attend an open public meeting on Tuesday September 29th 5-8 pm to learn about HD research in Scotland, and the Repair-HD programme. The meeting will be held at the University of Edinburgh Chancellors Building, next to the Royal Infirmary of Edinburgh. The meeting aims to promote public awareness of a European Union funded programme, Repair-HD, which is developing stem cell therapy to treat HD, HD research in Scotland and also community support and care available to families affected by this neurodegenerative disease.
 
Repair-HD is a unique multi-national interdisciplinary research programme integrating world-class research and clinical expertise in HD. It benefits from Scottish and UK government, European Commission and charity investment and funding in stem cell research at the Scottish Center for Regenerative Medicine at the University of Edinburgh and Roslin Cells Ltd, a not-for profit company owned by the University and the Roslin Foundation.
 
The meeting will feature talks, displays and posters for the general public and professionals from local and European clinicians and scientists actively engaged in development of new therapies for HD and other neurodegenerative disorders, and those providing care and support to the HD community. The meeting will inform of current and promising opportunities for support and treatment of HD and other diseases, and the continued public support required for their realisation.
 
Further information is providedin the appended poster. RepairHD Scottish HD Care Public Meeting Flyer Final The meeting is free but seating is limited. For registration online go to: www.repair-hd.eu. I look forward to seeing you there. Dr Paul A. De Sousa, PhD, MSc Reader, Centres for Clinical Brain Sciences & Regenerative Medicine, University of Edinburgh Chief Scientific Officer, Roslin Cell Ltd.

Catherine Martin has been appointed as the new chairperson of the Scottish Huntington’s Association (SHA), the only charity in the country supporting families living with the degenerative brain condition Huntington’s disease (HD).
 
Catherine (36) is a current board member and has a long standing relationship with the SHA. She comes from a HD family, her mother had the condition, so had a 50:50 chance of developing the condition herself. Catherine didn’t inherit the faulty gene, but growing up knowing it was a possibility made her very aware of the impact the disease can have.
 
Read more…

Thanks to funding from the Scottish Power Foundation, we are able to fully launch our award winning Wellbeing Volunteer Service across Fife. This will provide tailor-made support directly to families affected by Huntington’s disease across Fife and complement our existing HD Specialist and Peer Support services.
 
This was marked by a successful event last Thursday evening in Glenrothes attended by many Fife HD families, the Depute Provost Councillor Kay Morrison, the Foundation’s Phil Duffield, Fife Voluntary Action’s Janine Stenhouse and our own Bob Bogle. More to follow over the next couple of months!
 
For further details, contact Bob Bogle, Service Manager via  bob.bogle@hdscotland.org or on 0141 848 0308.

As we expand our much needed community fundraising activities across Scotland, there are now two brand new volunteering opportunities available.
 
Marketing Fundraising Volunteer details can be downloaded HERE.
Fundraising Volunteer – Collection Can Service details can be downloaded HERE.
 
As well as providing an active and fun experience, these volunteering roles can provide very valuable professional experience for someone looking to gain experience in a busy, vibrant fundraising team. For an informal chat about these volunteering roles, contact our Community Fundraiser Linda Byars on 0141 848 0308 or send an email to linda.winters@hdscotland.org

SHAYP has been successful in receiving funding totalling £1500 from the Carers Trust and Comic Relief. This money has been awarded to allow families the opportunity to access social experiences and spend quality time together as a family.
 
For example: –
 
A family may wish to visit Edinburgh Zoo and apply for costs for transport, admission and lunch. A family may wish to have a weekend in York and apply for £20 per person towards the cost of this.
 
The criteria to access the fund is:-
 
The money must be used for a family unit (with at least one person aged under 18 in attendance) to spend the day together.
 
Read more…

A new research Fellowship into improving care standards for people living with Huntington’s disease has been launched.
 
The £210K study is being backed by the Scottish Huntington’s Association and funded by the Scottish Government’s chief scientist’s office and the RS McDonald Trust.
 
The post has been awarded to Ms Daniela Rae who will be working with the University of Aberdeen Health Services Research Unit who have a strong track record in HD research.
 
Read more…

Yesterday saw well over a hundred HD family members, staff and volunteers to the Scottish Parliament to a formal reception hosted by Hugh Henry MSP, a long time friend of Scottish Huntington’s Association.

Marchers made their way to the Parliament in a wide variety of ways – buses, trains, cycling, walking, running, conga’ing and even a mass space-hopping down the Royal Mile!

The event was covered by STV news and you can watch their very informative piece HERE.

The Scottish Huntington’s Association and the University of Stirling have won the Perfect Partnership Award at this year’s SCVO Scottish Charity Awards.
 
After only one cohort of students having gone through the course – the world’s only accredited programme on managing care for people affected by Huntington’s disease – this very productive partnership has been recognised by the Scottish Charity Awards. Click on the above link for more details as well as a short video interview with our Chief Executive John Eden.
 
Above left is John with programme leader Dr Louise McCabe of the University of Stirling proudly displaying the beautiful wood and glass award itself.

The CHDI Foundation is a privately-funded, not-for-profit biomedical research organisation devoted to finding treatments for HD. There is very encouraging news of 5 clinical trials just started or about to start for possible treatments for Huntington’s disease. The pace of research and clinical trials continues to speed up and now is the time for families to consider getting involved in research if at all possible.

If you would like to help in this vital research work, please contact your local Huntington’s disease Specialist Service.

The number of people in Scotland living with an incurable degenerative brain disorder is on the rise according to latest figures released by the Scottish Huntington’s Association (SHA).

The SHA, the only charity in the country that supports people with the genetic condition Huntington’s disease (HD), is calling for a national action plan to bring consistency to levels of care being offered to meet the needs of the growing number of people impacted by the condition. The number of referrals the SHA are now dealing with has increased by 55% since 2012.

Read More..

An innovative UK first training programme has secured the Scottish Huntington’s Association (SHA) and the University of Stirling a shortlisted place at the SCVO charity of the year awards.

They have been chosen as finalists in the Perfect Partnerships category for their new course ‘Huntington’s disease (HD): An enabling approach to supporting families’. The course is designed as a continuous professional development qualification for health and social care staff from all sectors and disciplines as well as family members of people living with HD and others with an interest in learning more about the condition. Developed by the charity and delivered by the university’s School of Applied Social Science the first student intake from a variety of professional backgrounds completed the first course earlier this year.

Read More…

Ferry operator CalMac is helping one Barrhead family improve understanding of a devastating degenerative brain disorder across the Western Isles. Competition winners Jim Bavin and his wife Susanne have won a fourteen day Island Rover ticket donated by the company to the Paisley Scottish Huntington’s Association (SHA), the only charity in the country supporting families living with Huntington’s disease (HD).

The Island Rover ticket gives the Bavin’s unlimited travel across the CalMac network during their trip.

Read more…

When Elderslie man Bob Bogle decided he was going to take on the challenge of the year, he meant it.

Bob has vowed to cycle 2015 miles between now and the end of July to raise money for the Scottish Huntington’s Association (SHA), the only charity in the country that supports families living with the degenerative brain disorder Huntington’s disease (HD).

His cycle is part of the charity’s ‘Shape up with Winckless Challenge’ where fundraisers are being asked to join patron and Olympic medal rower Sarah Winckless to raise £50,000 to help pay for two new HD specialists.He is being supported in his endeavours by sports specialists Decathlon at Braehead who are helping with free bike maintenance and publicity for the duration of his challenge.

Read more…

“The Inheritance”, an Australian-New Zealand documentary about Huntington’s Disease, is now available on DVD/Video on Demand and comes with many great reviews by critics and the press.

Discovering that she has not escaped the family inheritance, Bridget embarks on a journey to honour her mother and find hope for her child. ‘The Inheritance’ is a personal narrative Australian-New Zealand documentary about one family and their experience of Huntington’s Disease. Filmmakers Bridget Lyon (Editor, Narrator and subject of the film) and her partner Jeff McDonald (Director/Producer) shed light on the history, science and impact of the disease as they come to terms with it in their family. Along the way, they witness the everyday heroism of people living with the disease and also meet a line-up of international scientists who are racing to find a cure.

To purchase the film on DVD or to Rent or Buy it online (Video on Demand) please visit the film website: http://theinheritancedocumentary.com/

Superstar of the track, Olympic champion and multiple former world record holder, Seb Coe is backing a new Scottish Huntington’s Association campaign to raise £50k.

The Paisley based charity that supports families living with the degenerative brain disorder, Huntington’s disease (HD), needs the cash to recruit two new HD specialists to boost the resources they offer people affected by the condition.

Seb is backing the charity’s Patron and fellow Olympian, Sarah Winckless, who is urging people to join her in a ‘Shape up with Winckless’ sponsored challenge. “I will be taking on a series of sporting challenges over the coming months and I would urge people to join me and get sponsored. It doesn’t have to be a major commitment, just something that you feel comfortable doing, whether a run, a walk or a cycle or a new sport maybe you haven’t tried before. Come and join me.” said Sarah.

Lending his support to Sarah, who is living with HD, Seb said: “You wouldn’t have to be in sport for very long to recognise what an extraordinary talent Sarah is, but I remember the day she told me about HD and her diagnosis. I think anything she has achieved in sport is dwarfed by the challenges the disease will present her with in the future. So, I whole heartedly lend my support and enthusiasm to her campaign and hope to see and follow many people taking on her challenge over the months ahead,” he said.

HD is a hereditary progressive condition that causes changes to muscle control, thinking processes and can cause long-term mental health issues. The average age of onset is between 33 and 45 and those living with the condition will require 24 hour care as it progresses into its later stages. Each child of someone diagnosed with HD is at 50% risk of developing the condition themselves. There is no cure.

It is estimated that there are around 1100 people living with the condition in Scotland with around 6000 more at risk.

“It is easy to take part in this challenge and I’m really looking forward to chatting and following everyone’s progress. Every little helps so why not join me get fit, have fun and raise some much needed funds,” added Sarah.

Anyone can join Sarah on her challenge simply by following her on Facebook/shapeupwithwinckless and signing up or following the link on the SHA website Shape up with Winckless.

Members of local support group for people living with an incurable disease put their best foot forward and raised £2200 for their cause.

Around 20 walkers, members of the Renfrewshire Huntington’s Disease Support Group and their friends, raised the cash on a recent Walk of Hope along the banks of the Clyde at Erskine.

The money will be donated to the Paisley based Scottish Huntington’s Association (SHA), the only charity in the country supporting families living with Huntington’s disease (HD)

HD is a hereditary progressive condition that causes changes to muscle control, thinking processes and can cause long-term mental health issues. The average age of onset is between 33 and 45 and those living with the condition will require 24 hour care as it progresses into its later stages. Each child of someone diagnosed with HD is at 50% risk of developing the condition themselves. There is no cure.

The walk was organised by Margaret Moncrieff from Houston.

“My sister was diagnosed with the condition nine years ago. It seems that my mother must have had the condition and therefore I had a 50% risk of inheriting the faulty gene. As it happens I have been fortunate enough to learn that I do not have the condition but I think my brother was not so lucky; he died without being diagnosed with the condition. So, I try and do all I can do help the SHA who do such brilliant work to support HD families,” said Margaret.

“Big thanks are due to all who supported us, including the ladies of the Erskine Keep-fit class and the staff of Walker Laird, Solicitors in Paisley. The funds will help the SHA to continue to provide a comprehensive support and advisory service to HD families.”

The support group meets once a month at Accord Hospice in Paisley and is always looking for new members. Anyone interested in joining Margaret should contact the Scottish Huntington’s Association on 0141 848 0308.

Better financial advice and planning for families living with the degenerative brain disorder Huntington’s disease (HD) is now on hand with the appointment of three new Financial Wellbeing Officers.The Scottish Huntington’s Association (SHA), the only charity in the country supporting HD families, has set up the new Financial Wellbeing team thanks to a £357,000 from the Big Lottery Fund.

Iain Thompson, a former advisor with CAB is the latest recruit to join them. “It will be our job to advise and support families through the complex world of personal and family financial planning. We will be here to help people living with HD with the many money issues they face. The debilitating nature of the disease means that people need to stop working relatively early with 67% of families affected living on an income below the national average and 33% living below the poverty line,” he said.

“But as well as help with day to day finances people living with HD face the reality of eventually not being in control of their own destiny and need to plan ahead for this time. We are now in position to help them through these difficult decisions that need to be taken.”

HD is a hereditary progressive condition that causes changes to muscle control.

The first intake of students on the UK’s first degree level module for professionals supporting families living with Huntington’s disease (HD) have successfully completed the course.

Devised by the Scottish Huntington’s Association in collaboration with the School of Applied Social Science at the University of Stirling, ‘HD: An enabling approach to supporting families’ was designed as a continuous professional development qualification for health and social care staff from all sectors and disciplines as well as family members of people living with HD and others with an interest in learning more about the condition. “Very few diseases require the support of so many health and social care professionals. During the course of the disease someone living with Huntington’s will require the expertise of physio, speech and occupational therapists, GPs, social workers and psychiatrists to name but a few,” said SHA’s chief executive John Eden.

“When health and social care staff encounter someone living with HD for the first time they frequently identify a need for training and education because it is not a condition which many professionals will have much experience or understanding of. This qualification was designed to address this head on. From the feedback we’ve had from students it has really helped those working with HD families to better relate to the issues people living with the condition experience.”

HD is a progressive condition that causes changes to muscle control, thinking processes and may cause long-term mental health issues. The average age of onset is between 33 and 45 and those living with the condition will require 24 hour care as it progresses into its later stages. It is also hereditary with each child of someone diagnosed with HD is at 50% risk of developing the condition themselves. There is no cure.

The 200 hour module was delivered over 12 weeks on a part time basis utilising a blended learning approach with two study days held at the Dementia Services Development Centre, University of Stirling followed by 11 weeks of online learning. The teaching team was led by Dr Louise McCabe, senior lecturer in Dementia Studies.

Gemma Gordon is team leader at the Bridgeview unit of the Linlathen Neurodisability Centre in Broughty Ferry and one of the first people to complete the course. “I really enjoyed the course. I’d been working with people affected by HD for around six years but mostly with people in the latter stages. It was fascinating learning about different types of care for people as the condition progresses,” said Gemma.

“I found it particularly useful talking with other professionals working in the field and learning from their experiences. I would definitely recommend it to anyone looking to expand their knowledge of HD care techniques.”

The next course starts in September and enquiries should be made to Gillian Hardisty, at: DempPG@stir.ac.uk, 01786 467746

A youth organisation dedicated to supporting young people affected by the degenerative brain disorder Huntington’s disease (HD), has devised an innovative information resource to increase understanding of the condition.

The Scottish Huntington’s Association Youth Project’s (SHAYP) ‘HD Routes’, aims to improve the lives of young people who live in families affected by HD. The new learning pack has been developed over the last 12 months by the team in close collaboration with the young people they support and has been funded by the Young Start Fund.

Launched by Acting Children and Young People’s Minister, Fiona McLeod MSP, she said the new resource would be a significant addition to help increase understanding among the community of 6000 people potentially at risk of developing the disease in Scotland.

Acting Minister for Children and Young People Fiona McLeod, said: “I’m delighted to see the HD Routes resource being launched. This will make a profound difference to the lives of children and young people living in families affected by Huntington’s Disease.

“The Scottish Huntington’s Association Youth Project is leading the way through its pioneering work with families and I’m pleased to hear that young people have been involved at every stage in the design process, resulting in an accessible, engaging resource. This is a UK first – no other organisation has developed such specialised information about the condition specifically for young people.”

HD is a hereditary progressive condition that causes changes to muscle control, thinking processes and can cause long-term mental health issues. The average age of onset is between 33 and 45 and those living with the condition will require 24 hour care as it progresses into its later stages. Each child of someone diagnosed with HD is at 50% risk of developing the condition themselves. There is no cure.

It is estimated that there are around 1100 people living with the condition in the country with five times that in danger of developing the condition.

The charity’s youth service provides one to one support to young people at risk of HD and also organises group events and activities across the country. SHAYP HD Routes Project Manager, David Drain said: “Young people living in HD families have a multitude of emotional experiences to deal with as they grow up. Growing up in an HD family they will gradually realise that they too might develop the condition affecting one of their parents, with the added pressure that often children become carers at a very young age. This resource will help them understand what the implications of the disease are for them in a easy to absorb format.”

HD Routes makes the most of games and fun activities to help young people learn more about HD and the challenges that living in an HD family will bring as they grow up.

Although designed specifically for young people, it will also be great resource for professionals and other adults looking for accurate information written in simple, easy to absorb language.

HD Routes is available both as a paper version and online version www.hdroutes.org