In the first of a series of blogs as part Huntington’s disease awareness month, community fundraiser Gemma Powell looks at how even the smallest actions are creating big changes in the lives of families living with HD.
When Scottish Huntington’s Association was founded in 1989, there was very little understanding or recognition of Huntington’s disease. This lack of awareness, which has impacted upon generation after generation, is often considered to be as harmful to families as the condition itself.
Our families living with HD still need to explain themselves over and over. They have that all-too-familiar exchange of: “No they’re not drunk, they have a condition.” We’ve come a long way in the past 30 years, but today there are still people living with HD across Scotland who are isolated in their communities. This is not, and has never been, okay.
SHA is the only charity in Scotland that is committed to working with the HD community and the wider general public to create real change for people living with HD. With every campaign, every conversation, every share on social media, we are helping to reduce the stigma and empowering families to talk openly and to seek support when they need it – be it from a friend, SHA or health and care services.
The sum of all our actions, great or small, WILL lead to a better HD Scotland. Here’s a few simple steps you can take:
- Like, comment and share! Follow us on social media, help spread the word and encourage your friends and followers to get involved.
- Facebook ‘Scottish Huntington’s Association’
- Twitter ‘ScottishHD’
- Instagram ‘ScottishHD’
2. Join our mailing lists and forward our newsletters to three people who are new to SHA. Did you know we send out three different newsletters to people and organisations all across Scotland?
- If you’re looking for research news, make sure to subscribe to HeaDline.
- To learn all about fundraising, sign up for our regular e-bulletin full of the fantastic things people in the community are doing for HD.
- Or if you prefer to keep up with the charity more generally, subscribe to SHAre, our seasonal newsletter.
Subscribe here – and remember, there’s nothing stopping you signing up for all three!
3. Share your own experience – if you have been impacted by Huntington’s disease in any way, your story is worth telling! The most powerful way to increase understanding is to give a platform to people with HD, their carers, young people, professionals, family members, friends, and colleagues. By sharing your story through SHA, you will help to raise awareness and provide comfort and reassurance to other people who are going through the same thing! Have a read at some the stories in this blog and get in touch if you fancy sharing your own.
4. Become a You, Me and HD ambassador. You’ll give talks to groups and organisations in your local area and champion your efforts and the work of charity on social media! If you’re looking for a volunteer opportunity that delivers real impact and supports you to develop new skills, this is it! Training is provided and out of pocket expenses will be covered.