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

Before we got stuck into the business of our 30^th 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!

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!

New guides equip young people to cope with Huntington’s disease

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.

Glasgow chosen for UK Huntington’s disease drug trial centre

HeaDline Service Now LIVE

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!

This blog was written by SHA Community Fundraiser Linda Winters on her experience of doing an overseas trek for charity. If you are thinking about doing an overseas trek why not join us on the Great Wall Discovery Challenge in 2019 or speak to us about organising your own.

As a fundraiser, I get to meet some incredible people, doing great things to change their community and improve lives.

One ordinary day at the office, that phone call happened. A fundraiser who also happened to be a family member and Trustee called to ask for some fundraising materials and tell us she is embarking on an overseas trek of the Himalayas later that year. I was immediately impressed by her ambitious spirit, but then I was pulled in…

I had intended at some stage in my life to do something adventurous for charity after bringing up my kids.  Now could be my chance, after I said this sounds amazing, Marie asked ‘why don’t you join us’?! Arrrgh, ‘okay I will,’ the quickest decision I had ever made – well nearly!

One telephone call later and I was booked up as a Volunteer Fundraiser to trek the Himalayas with Marie and her friend but it was the amazing causes that really did it.

Arriving in Kathmandu was an experience of a life time; it felt like we had landed on a movie set. Our guide for the trek collected us at the airport and took us to our hotel and ran through the next 14 days itinerary.  I sat there so excited with the realisation of what I had signed up to do.

The trek was a life changing experience; even partially conquering my fear of heights as I crossed the squinty, shaky bridge with missing planks.

The daily walks were surrounded by breath taking views of the snow topped Himalaya mountain range and meeting people from around the world heading in different directions. For 8 days we walked for about 5-7 hours per day, reaching Poonhill on day 8 at 3,210 metres. Regular stops for drinks and food were well organised. The local people were so friendly and at no time did I ever feel unsafe. Although we didn’t speak the same language we managed to communicate. Our accommodation was far from deluxe but gave us everything we needed, food, bed, and occasionally shower facilities.  It was humbling to see how other cultures live and in many ways, are less stressed with fewer material possessions.

We witnessed many villages that had been washed away by the monsoon with lots of lives lost and bodies never found under the rubble. Whole families destroyed in the landslides – it was sad to see. I did wonder to myself what services were available for people who had lost loved ones and how they coped. The communities really worked together and made the most of what was available to them and acceptance was maybe part of it.

Anyone taking on an overseas trip, be prepared for different emotions, everyone on your trip will feel the same and you can all support each other.  The biggest emotion will be the feeling of achievement and knowing that you did something for others. Planning for your trip is important and the charity you are supporting will be delighted to help with this.

I raised over £2,000 for Scottish Huntington’s Association and Diabetes UK Scotland. I would also say, if you are considering embarking on an overseas trip ‘do it’ go with no expectations and you will have an experience of a lifetime. Just think, doing something so life changing but helping others.  The feeling couldn’t really get any better!!!