The Huntington's Disease Association, the Scottish Huntington's Association and the Huntington's Disease Association of Northern Ireland are delighted to announce we have secured a Westminster Hall Debate on the topic of Huntington's disease and the challenges the community faces.
The debate will take place Wednesday 9 November from 9.30am - 11.00am.
The debate will be opened by Hilary Benn MP who has also agreed to be a Huntington's disease champion in parliament.
Debates held in Westminster Hall give MPs a chance to debate issues and to receive a response from a Minister. This will help us to find key decision-makers for our future campaigns and help us to understand government thinking on issues that may affect you.
9.30am on Wednesday 9 November.
How you can help
We are calling out to the Huntington's community to ask you to write to your MP and ask them to attend the Westminster Hall debate. You can find a template email/letter below.
If you receive a response from your MP that they will be attending please let us know at comms@hda.org.uk.
Template letter
Subject: Specialist Huntington's Disease services EDM - Westminster Hall debate
Dear {INSERT MP’s NAME},
I hope this email finds you well.
Thank you so much for showing an interest in the Specialist Huntington’s Disease Services EDM. For your reference, this is the EDM: https://edm.parliament.uk/early-day-motion/59775
The Huntington's Disease Association (HDA) is expecting a Westminster Hall debate to be organised soon to raise the profile of Huntington’s disease (HD) and the challenges those affected by the disease face. The date has been set as Wednesday 9 November, 9.30am - 11.00am.
The disease has a big impact on me and my family, given the complexity of the condition, the lack of a cure and its generational impact. {INSERT SOME INFORMATION ABOUT YOUR PERSONAL EXPERIENCE OF HD HERE}
People living with HD and their families are faced with significant challenges throughout their lives. Young people grow up in the shadow of HD; facing daunting choices around starting a family and genetic testing. Many care for relatives with HD while coping with worries about developing the disease themselves.
As Huntington’s disease is a rare, genetic, neurodegenerative disorder, it causes a triad of symptoms and multiple disabilities; physical, cognitive and psychiatric. Once someone is symptomatic, the progressive nature of the disease means it limits the person's ability to work, and their partner/relative who often also reduces or gives up their work to care for the person living with HD. This has a huge impact on a household income, quality of life and mental health.
As the disease is rare, there is a lack of understanding about the condition, how to support affected families and provide the best possible care.
We hope that the Westminster Hall debate will be an opportunity to share insight into the challenges our community faces and what our elected MPs can do to support us.
It would mean the world to me if you could attend the Westminster Hall debate to speak on my behalf. I would be more than happy to share my personal story and experiences with you ahead of the debate and the HDA has some brilliant briefings and resources to give a broad picture of HD.
Thank you so much for your time.
Kind regards,
{INSERT YOUR NAME}