Scottish Huntington's Association

17/06/2026

This year’s Family Gathering will take place on Saturday 14 November 2026 at the Carnegie Conference Centre in Dunfermline.
We are lining up a fantastic programme of speakers and activities, including a look at the latest developments in research.
Our Patron Sarah Winckless MBE will once again be joining us for what promises to be an uplifting and informative day.
Registration will open later in the summer – please note that as part of our ongoing work to reduce overheads and make every penny go further for families, invitations will be sent by email rather than post. You will also be able to book your place(s) via our website and social media.
To sign up to our email list or to refresh your communication preferences – click https://bit.ly/4uuL6D9.
It takes just a few ticks to tell us what emails you would like to receive, such as the Family Gathering invitation, our SHAre e-magazine, and information about events and ways to get involved.
*We are sincerely grateful to Family Gathering sponsors Skyhawk Therapeutics*

13/06/2026

🎶💃 We're all set and ready to go!

The stage is set, the music is queued, and the Ross Bandstand is looking incredible ahead of Dance 100. We can't wait to welcome our dancers, supporters, performers and volunteers for what promises to be an unforgettable day.

Let's dance 100 songs, raise vital funds, and show families impacted by Huntington's disease that they are not alone.

See you on the dance floor! 💜

12/06/2026

We’re looking forward to tomorrow when we will welcome hundreds of family members, supporters, performers and volunteers to Dance 100.

The stage is set for a wonderful day, so to get us all in the mood for dancing, here are our wonderful friends the The Dughoose Ska Band performing what has become Dance 100's unofficial warm-up song.

If you're not able to make it along, please watch all the action on our socials and send messages of support to help our dancers to keep going for the full 100-song, five hour set.

11/06/2026

🚨 LAST CHANCE TO GET YOUR DANCE 100 TICKETS! 🚨

This Saturday, the Ross Bandstand in Princes Street Gardens will come alive with music, dancing, and community spirit as we take on the ultimate challenge – dancing through 100 songs back-to-back! 💃🎶

Join us for an unforgettable day featuring DJ Steve McKenna, amazing live performances, and hundreds of people coming together to support families affected by Huntington's disease.

We've had an amazing response from the community and can't wait to bring you all together.

Don't miss your chance to be part of something special.

👉 Get your tickets now: https://scottishhuntingtonsassociation2.beaconforms.com/form/7cc36f94

💜 Dance. Connect. Make a difference.

10/06/2026

⚽🏴󠁧󠁢󠁳󠁣󠁴󠁿 Join Scottish Huntington’s Association's Tartan Army Kick Off! 🏴󠁧󠁢󠁳󠁣󠁴󠁿⚽

The 2026 World Cup is here, and we're inviting football fans, families, friends, workplaces and communities across Scotland to come together, celebrate the beautiful game, and raise vital funds for Scottish Huntington’s Association.

Whether you're a football fanatic or just in it for the atmosphere, there are plenty of ways to get involved in our Tartan Army Kick Off campaign:

🏠 Home Viewing Party
Gather your friends and family, deck out your living room in football colours, and enjoy the matches together. Ask guests for a donation to Scottish Huntington’s Association or incorporate a sweepstake, match prediction game or quiz!

🍻 Pub Viewing Party
Team up with your local pub to host a match-day event. Enjoy the excitement, friendly competition and community spirit while raising funds for families impacted by Huntington's disease.

⚽ Keepy-Uppies Challenge
How many keepy-uppies can you manage? Challenge your friends, colleagues and teammates, collect sponsorship, and share your attempts on social media using .

🎯 Sweepstake & Match Predictor Games
Add some extra excitement to the tournament with a World Cup sweepstake or match prediction competition. Friendly rivalry for a fantastic cause!

🧠 The Scottish Fitba’ Quiz
Put your football knowledge to the test. Host a quiz night at home, in your workplace or local venue and see who can claim football bragging rights.

🧁 "Cupcakes for the Cup" Bake Sale
Bake, buy and enjoy delicious treats while supporting Scottish Huntington’s Association. Decorate your bakes with our downloadable cupcake toppers to make them extra special!

💙 Every event, challenge and cupcake sold helps Scottish Huntington’s Association continue supporting families across Scotland impacted by Huntington's disease.

⚽ Pick your activity, gather your team, and make this World Cup one to remember. Click the link in the comments to sign up and download your fundraising pack today because yes sir - we can fundraise!

Download your fundraising pack here: https://hdscotland.org/scotland-world-cup-2026-fundraising-campaign-the-tartan-army-kick-off-supporting-scottish-huntingtons-association/

09/06/2026

Dates for your diary, including support groups and fun challenges.

Please message us for support group venue and time details or email your local HD Specialist Service (https://hdscotland.org/find-support/hd-specialists/).

For fundraising event information, please message us or email [email protected].
Alternatively, you can call us on 0141 848 0308.

Saturday 13 June – Dance 100, Ross Bandstand, Edinburgh (book your tickets at https://bit.ly/Dance100Edinburgh)
Wednesday 17 June – Informal carer support group, Curl, Aberdeen
Tuesday 23 June – Lanarkshire Support Group, Coatbridge
Thursday 25 June – Tayside Carers' Meeting, Dundee
Tuesday 21 July – Lanarkshire Support Group, Coatbridge.
Saturday 25 July – Scottish Huntington’s Association Skydive, Fife
Tuesday 18 August – Lanarkshire Support Group, Coatbridge
Saturday 22 August – Scottish Huntington’s Association Zipwire, Aviemore
Thursday 3 September – Greater Glasgow and Clyde Support Group, Pollok
Tuesday 15 September – Lanarkshire Support Group, Coatbridge
Friday 16 October – Halloween Bungee Jump, Perth and Kinross
Thursday 10 December – Greater Glasgow and Clyde Support Group, Pollok

08/06/2026

Registration is open for the EHDN Clinical Research Congress, which this year will be held in Krakow, Poland, from 22 to 24 October.

All sessions will be open to clinicians, scientists, advocates and family members impacted by Huntington's disease.

People whose lives are impacted by Huntington's disease, clinicians and researchers can apply for a travel and accommodation reimbursement of up to 400 euros to attend the congress if they are also members of EHDN.

Full details of congress, including the preliminary programme, registration and how to apply to become an EHDN member, can be found at https://ehdn.org/ehdn2026/

Important dates to note:
• 1 June to 31 July 2026 – registration open.
• 25 June 2026 – the deadline for applications for regular or associate membership. *Applications received after this date will not confer eligibility for congress travel or accommodation reimbursement.*
• 31 December 2026 – deadline for submission of reimbursement form.

If you have any questions, please contact the EHDN Clinical Research Congress Organisation Team at [email protected].

06/06/2026

💙 ONLY 1 WEEK TO GO UNTIL DANCE 100!

In one week the iconic Ross Bandstand in Princes Street Gardens will come alive with music, dancing, laughter, and community spirit as we take on the ultimate challenge - dancing to 100 songs back-to-back! 🎶💃

Whether you’re joining us to dance every beat, cheer from the sidelines, or simply soak up the incredible atmosphere, Dance 100 promises to be an unforgettable day full of joy, connection, and support for families impacted by Huntington’s disease across Scotland.

✨ Live DJ
✨ Fantastic performances
✨ Amazing energy
✨ Incredible community spirit
✨ One unforgettable day

🎟 There’s still time to grab your tickets from just £5!

Get your friends, family, or colleagues together and come be part of something truly special.

👉 Sign up now via the link in our comments.

Let’s dance, unite, and make a difference together 💜

05/06/2026

🚶‍♂️‍➡️Good luck to our amazing fundraisers who are taking part in the Aberdeen Kiltwalk this weekend! 🚶‍♂️

Our families know they never have to face Huntington’s disease alone - by taking on this challenge, you are standing beside them every step of the way. Every mile you walk helps to raise vital funds to provide a lifeline service to those who need it most.

We can’t thank you enough for embracing this mission, and wish you lots of sunshine, beautiful scenery and a wonderful walk! 🌞

Feeling inspired and want to get involved? ⭐

Places still remain for Dundee and Edinburgh Kiltwalks, but they won’t last long! If you would like to join us, we would love to have you on . Maybe you fancy walking with our staff team at the Edinburgh Kiltwalk?

Interested? Contact us at [email protected] for more information. ✉️

03/06/2026

Research news:
"One year into treatment, SKY-0515 continues to lower huntingtin and shows encouraging trends with signs and symptoms of HD. A larger trial is enrolling to determine whether the drug truly slows HD progression” - Dr Rachel Harding

One year into treatment, SKY-0515 continues to lower huntingtin and shows encouraging trends with signs and symptoms of HD. A larger trial is enrolling to determine whether the drug truly slows HD progression