Get involved

Each year the global Huntington's community unites during the month of May in a shared mission to raise awareness. This year we were really active and had lots of interactions on TV and in the newspaper. You can see some of the coverage on the in the news page.

 

What's next? 

 

Write to your MP

To mark Huntington’s Disease Awareness Month this year, we launched the #HuntingtonsInMind initiative. This campaign has been developed to raise awareness of the mental health impact that a diagnosis of Huntington’s disease has on patients and their families and the need for better mental health support to be made available.


You can support the campaign by writing to your MP to make them aware of these important issues and asking them to sign an ‘Early Day Motion’ on Specialist Huntington’s Disease Services. Signing an Early Day Motion is a way for MPs to show their support for this important issue.


We have created a template letter to help you write to your MP. You can use this letter to let your MP know that you want them to support people who have Huntington’s disease and their loved ones. You can prepare the letter by filling in the sections about your MP; your constituency; and why support for people who have Huntington’s disease is important to you.


Once you have filled out the template letter, you can send this to your MP. You can find out who your MP is and send an email visiting the website they work for you and entering your postcode. 

We would be very grateful if you let us know if you do write to your local MP, as we will be able to help follow-up with them on your behalf. To let us know, or for any questions and advice, please email [email protected]

 

Template Letter

 

Subject: Huntington’s in Mind Campaign and mental health support for people who have Huntington’s disease

Dear [insert Parliamentarian name],

I am writing to you as a constituent in [insert constituency], to make you aware of information regarding current challenges faced by people who have Huntington’s disease and to highlight the opportunities that exist to improve outcomes for those affected.

As you may be aware, Huntington’s disease is a rare genetic neurodegenerative disorder that affects around 1 in 10,000 people across the UK. Since this complex disease is not fully understood, there is no cure and only limited treatment options are available to help manage symptoms.

I am writing to you to raise awareness of the mental health impact that a diagnosis of Huntington’s disease has on patients and their families and the need for more formalised and comprehensive mental health support to be made available.

Research on mental health support for Huntington’s patients has found considerable variation in the quality and availability of care across the country, with key barriers including:

  • A lack of available healthcare professionals to deliver core elements of care, with particular gaps in specialist nursing and social care support.
  • Limited provision of mental health support for patients, caused by staffing shortages and fragmentation between local pathways.
  • Delays in specialist referral for those with suspected symptoms, due to a limited availability of staff with appropriate knowledge and a lack of willingness from some services to take on Huntington’s patients.

This issue is important to me because [insert information about why Huntington’s is important to you e.g. I have a family member who has Huntington’s disease/I am a healthcare professional working with people who have Huntington’s disease/I have a diagnosis of Huntington’s disease].

You can show your support for this important issue by signing the recent Early Day Motion 72 on Specialist Huntington’s Disease Services https://edm.parliament.uk/early-day-motion/59775. You can also find out more about Huntington’s disease and the Huntington’s in Mind campaign, led by the Huntington’s Disease Association, via their website https://www.hda.org.uk/

Yours sincerely,

[insert your name and address (your address is important so that your MP knows you are a local constituent]