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Huntington’s Disease Awareness Month – choose your move and make a difference for families

May is Huntington’s Disease Awareness Month – a time to increase understanding, educate, amplify voices, and bring communities together in support of families impacted by Huntington’s disease.

This year, we invite you to be part of something powerful.

Make a Move in May
A move can look different for everyone. It might mean:

  • Educating yourself by learning the facts about Huntington’s disease and how it impacts families in your community
  • Joining in with awareness-raising efforts by sharing our posts on social media
  • Starting a conversation and helping reduce stigma by sharing your story
  • Helping to fund our specialist Huntington’s services by donating
  • Getting involved with fundraising by taking part in an event or organising your own fundraiser

Every move you make this May – big or small – helps families feel supported and understood.

Why is it important to raise awareness of Huntington’s disease?
Raising awareness of Huntington’s disease matters because it helps break down misunderstanding, stigma, and isolation for the families impacted. When more people understand the condition, individuals are more likely to feel supported within their own communities rather than judged or overlooked.

Greater awareness also reduces the need for families to repeatedly explain Huntington’s disease – even to healthcare professionals – easing an already heavy burden.

Crucially, it helps decision-makers recognise the real challenges families face, leading to better support, funding, and services. Ultimately, awareness turns knowledge into compassion and action, ensuring no one faces Huntington’s disease alone.

Why does this year matter more than ever?
We are facing a perfect storm of rising costs, funding cuts, falling donations, and increasing demand for our specialist services. More families are turning to us for help at a time when resources are under growing strain. By raising awareness, more people can understand the urgency of the situation, support our work, and help ensure we can continue to be there for every family who needs us.

How can you Make a Move in May?

1. Raise awareness

  • Share our posts and videos on social media
  • Start conversations at work, school, or in your community
  • Help challenge stigma and misconceptions

2. Stay informed

  • Learn more about Huntington’s disease and its impact
  • Follow our channels as we explore key themes throughout the month
  • Sign up for our SHAre e-magazine and other exciting updates from the charity

3. Ways to donate

4. Take part in events

  • Lace up for a marathon, get your tartan ready for a Kiltwalk (in Dundee, Edinburgh or Aberdeen), or join us at Dance 100
  • Check out our events calendar to find the ideal event for you
  • And don’t forget – bring friends, family, or colleagues along to join in the fun

5. Organise your own fundraiser

  • Host your own dance event, gala dinner, coffee morning, bake sale or walking challenge – anything that suits you
  • Check out our Tartan Army World Cup or Tartan Tee-Off fundraising packs for more inspiration and resources
  • Let our team know your ideas to get advice and support from start to finish. Kindly fill out our form and a member of the team will be in touch shortly after.  

Together, we can build understanding, inspire action, and make sure no one faces Huntington’s disease alone.