Host a pop-up event
Host your own awareness raising or fundraising pop-up event in your local area. If you are interested in holding one, you can find out more and register below to receive our pop-up event pack.
This year's theme is Behind the Gene.
The invisible challenges and untold stories of Huntington’s disease.
Too often, people affected by Huntington's disease find themselves educating the public about their condition.
Not everyone has heard of Huntington’s disease, and that includes healthcare professionals. A staggering 85% of 150 people asked in a recent survey had to educate a doctor, nurse or healthcare professional about Huntington’s disease. This is just one of the many challenges the Huntington’s community faces. We are trying to change this.
Community involvement
The involvement in the lead-up to this year's awareness month has been incredible.
So far we have sent out:
- 21 pop-up event packs
- 69 factsheet distribution packs
If you can't see your area on the map below, you can register to be one of our distributors this May.
You can take these to your local GP, hospitals, care homes, or any healthcare setting where there is an opportunity to raise awareness and encourage training around Huntington's disease.
Below is a list of pop-up events - if you are close by, say hello and show your support
There are 21 awareness month events being held during May across England and Wales. Some are taking place in care homes but below is a list of ones that our community may want to visit.
1 May - Isle of Wight - Leisure Medina, PO30 2EW
5 May - Stroud - Chalfird Sports and Social Club, GL6 8LZ
6 May - Birmingham - Kings Heath Train Station
6 May - Liverpool - Neuroscience Research Centre, L9 7LJ
7 May - Sandiacre, Nottingham - Buonnissimo Restaurant
10 May - Torpoint, Cornwall - Torpoint Highstreet Market, PL11 2AA
12 May - Barnsley - New Options Gym, Grimethorp
15 May - Hull - Morrisons, Holderness Road, HU9 3JA
22 May - Sheffield - Devonshire Arms, S5 7HE
23 May - Wokingham - Waitrose, Rectory Road, RG40 1BB
How you can get involved
Distribute factsheets
Can you help us by distributing training and awareness factsheets to healthcare settings in your local area? Last year 25 areas were covered.
Share your story
You can share quotes or videos with us or even feature in a blog. The theme is your life in a Huntington's family and what you wish others knew about Huntington's disease.
Download our press release templates
Local press love real stories and this is a great way to help raise awareness. We have created templates for you to share your story or pop-up event this May.
Use our social badges and graphics
Show your support this awareness month by changing your profile picture or sharing our graphics.
Do your own HDWalk
Built around the idea that every step tells a story, HDWalk is our new awareness month fundraiser. You could choose to walk to honour someone you love or walk to mark a milestone in your own Huntington’s journey.
Attend one of our awareness month events
Finding your way: Awareness Month special
13 May 2026 - 7:00pm
For families, Support
Huntington's and me: family members talk about their experiences
20 May 2026 - 7:00pm
For families, Support
Read the stories from the Huntington's community
Behind the gene - Susan's story
Awareness, Carers, Community stories
Behind the gene - Dawn's story
Awareness, Community stories, Youth engagement service, Carers
Behind the gene - Lisa's story
Awareness, Community stories, Carers
People with Huntington’s disease deserve to get the best care possible
Professionals, Support
Behind the gene - Becky's story
Community stories, Awareness
Behind the gene - Maureen's story
Awareness, Community stories
Educating health and social care professionals
What we do
We support adults and families
We support children and young people
