New Year’s resolution: Raise awareness of Huntington’s disease

January is a long month. On the calendar it deviously disguises itself as an average 31 day month but this is clearly a lie! By this point in January, our New Year’s resolutions have fallen by the wayside (let’s be honest, exercising every day was never going to happen) and it’s too easy to feel demotivated waiting an eternity for payday and sunlight past 4 o’clock.

However, if you resolve to do one thing this year, why not make your New Year’s resolution to raise awareness of Huntington’s disease!? Why not pick a resolution that will make things better not only for your own friends or family affected by Huntington’s disease, but better for the community as a whole in Scotland and even across the globe! 2019 is the year people learn about Huntington’s.

There are lots of small actions you can take which add up together and make monumental change – especially when we’re all working towards this mission together! It’s #youandmeagainstHD in practice!


Follow our Social Media channels and share our awareness raising posts!

Facebook – www.facebook.com/ScottishHuntingtonsAssociation
Twitter – @ScottishHD
LinkedIn – www.linkedin.com/company/scottish-huntington-s-association
Instagram – @scottishhuntingtons

Subscribe to information about Huntington’s disease and forward on to your own network!

SHAre
Fundraising eBulletin
HeaDline
HD Buzz

Sign up to SHA info here: http://www.hdscotland.org/you-and-me-against-hd


Tell your story!

If you living with Huntington’s disease in your family, you’re a warrior! You face challenges day-in, day-out that other people would never even consider. Your story is worth telling and this really is the most powerful way to help the general public understand this cruel condition. Whether you tell a couple of people who may not have come across HD otherwise, share it on Social Media, or decide to share it with the charity to share more widely it’s worth it. Have a look at Lauren’s story below..

https://www.dailyrecord.co.uk/lifestyle/family-kids/young-mum-reveals-fears-over-13879808

If you want to share your story with SHA, please email gemma.powell@hdscotland.org


Become an SHA Ambassador!

As part of our 30th Anniversary celebrations we’re recruiting ambassadors that can represent SHA in their local area. This could be anything from giving a talk to a local rotary club, organising a social fundraising event, to nominating SHA for support from local business’s – each ambassador has full control over the activities they want to do!

Email sha-admin@hdscotland.org for more information!

Fundraise for SHA!

Raising awareness is one of those great side effects of fundraising (there are many!). We have a full calendar of fundraising events including many external events that you can get involved in or you could even organise your own!

Check out our events calendar here: www.hdscotland.org/fundraising-events/

2018 was a stellar year for Scottish Huntington’s Association!

2018 was a stellar year for
Scottish Huntington’s Association!

Before we got stuck into the business of our 30th anniversary celebrations in 2019, the SHA staff team took a moment to reflect on some of the highlights of 2018. There was a shared feeling in the room of, ‘where did that year even go!?’ but when we paused to reflect it became clear that the year went to good use!


National Care Framework was launched in 4 localities!

Grampian Framework Launch
National Care Framework for Huntington’s Disease – Grampian launch, August 2018

As many of you will know localised versions of our National Care Framework have gone live in Ayrshire & Arran , Fife , Grampian , Lanarkshire & Lothian . Our service staff speak of how it is being used not only by themselves but by other health and social care staff to ensure better results and care for families living with Huntington’s disease. The Scottish Government is now considering how our Framework might be used as a model to help people with other neurological conditions. This is an especially proud moment for everyone who has made this happen, from our family members, SHA staff members, health and social care staff, politicians and more. Here’s to a Scotland where everyone has access to the right services regardless of condition or postcode.


We’re all VERY proud of our colleagues!

Talking of our service staff, they have done SHA proud yet again. We think it would be hard to find a room filled with more caring, dedicated and brilliant humans than our all-staff get together (we may be biased!). But really, our HD specialists, Financial Wellbeing Officers, youth workers and their admin support have really given their all to supporting families this year and that was evidenced by stories shared about proud moments throughout the year and their hopes for their clients.

And we honestly can’t fail to mention the head office staff with our admin, finance and fundraising teams. They never stop pushing to do better and are an integral part of how the charity operates. Thanks for all your hard work to everyone in the SHA staff team!


Fab new resources for young people

Many of us had hearts in their eyes for the new  youth service resources, ‘Living with Huntington’s disease; A guide for Young People Aged 8-12 and13+.’ Although these tools are simple to use, a lot of hard work went on behind the scenes by the SHAyp team. The result is a high quality resource that young people can use, alongside their Specialist Youth Advisor, to help navigate the many complex issues that HD creates in their lives. Well done youth team!


Scotland at the forefront of research for Huntington’s disease

At the end of 2017 the world received some very exciting research news for Huntington’s disease and our phones went wild with hopeful family members! To keep people in the loop we launched HeaDline – a newsletter which gives up to date information on research news from across the globe. We were determined Scotland should be involved in future research and have a voice in all things pertaining to Huntington’s disease treatment. In July we received the news that The Queen Elizabeth University Hospital in Glasgow had been chosen as a UK research centre for Wave Life Sciences’ PRECISION-HD trials! And we’re hoping for Scotland’s involvement in other trials in the future.


Our incredible community of supporters have knocked it out the park for the HD community!

We would be remiss if we didn’t talk about our supporters in this blog. What a year! Our supporters have ran marathons, pop up shops, SHAre tea parties, and so much more. We’ve had people do skydives, wing walks, assault courses, kiltwalks, ultramarathons – the list is endless! All of our supporters have helped fund everything you see above and just as important got people talking about Huntington’s disease! We shouldn’t be surprised by the effort and heart our supporters put into helping SHA but we always are. Thank you doesn’t seem like enough but it’s a start!