Support in the North West of England

We are here to support you whether you are looking for peer support or advice from a professional. Below you can find out more about our Specialist Huntington's Disease Advisers and local branch and support groups.

Specialist Huntington's Disease Advisers

Our specialist advisers are experienced and compassionate care management professionals. 

They support anyone who needs their help at any stage of the Huntington’s journey. They can help people living with the disease, people at risk of inheriting the disease, family members and carers, and children or young people. They can even advise friends, neighbours, employers and your medical team.

Our Specialist Huntington’s Disease Advisers can help by:

  • providing a listening ear, advice and emotional support
  • delivering our confidential telephone helpline service
  • coordinating support with medical, health and social care professionals
  • making referrals into specialist Huntington’s disease clinics
  • advocating for the person with Huntington’s disease to get the best support
  • organising and attending local support networks and carers’ group meetings
  • providing information resources on symptoms and how to manage them
  • connecting younger family members with our Youth Engagement Service - HDYES
  • giving support for sensitive end-of-life care
  • educating medical, health and social care professionals
Anita - Huntington's Disease Association

Anita Daly

Merseyside, Isle of Man

0151 487 6514

Debs - Huntington's Disease Association

Debra Robinson

Greater Manchester, Cheshire

01477 534434

Thereasa - Huntington's Disease Association

Theresa Westhead

Lancashire, Cumbria, Wigan, Bolton

01942 864645

James - Huntington's Disease Association

James O'Connor

Specialist Youth Worker (Cumbria, Lancashire)

0142 2411466


Ian - Huntington's Disease Association


Youth Worker (Merseyside, Greater Manchester, Cheshire)

01922 661227

Branch and support groups

You can click on each branch and support group to find out more about the groups and where they meet. If you can't see one in your area and you are thinking about setting one up, please email and we can support you in doing this.

Cumbria branch

This branch provides support for the families of Cumbria affected by Huntington's disease. We want to create a safe forum were members can meet, to discuss all aspects of life with Huntington's disease, as a carer or a person with the disease.


We are very interested in providing support for younger family members as from experience we know of the impact this disease can have on all aspects of life. As a family that has Huntington's disease, although no history known, we are very aware of the stresses and strains this disease can cause.



Where we meet

Virtual at present.



Key contact

Becky Brown



Specialist Huntington's Disease Adviser

Theresa Westhead

01942 864 645

Manchester support group

The Manchester support group was set up by Sam Keenan. Her family are affected by Huntington's disease and her aim was to help local families. The group now covers a wide area from the East of Manchester Royton, Shaw, Oldham all the way through Manchester to Cheshire.


The aim still is to provide local families affected by Huntington's with a cuppa, chat and company. Everyone sits and chats and talks about what is happening to them at the moment knowing that the others there know exactly what they are going through.


We meet every couple of months on the last Wednesday of the month between 7.00pm and 9.00pm. The meetings rotate venue every time to make sure that it’s not too far for people to travel.


Visit our Facebook page



Where we meet

We meet at areas all over Manchester and Cheshire. Contact us for more details.



When we meet

The meetings are usually every two months on the last Wednesday between 7.00pm and 9.00pm.



Key contact

Sam Keenan and Clare Braithwaite



Specialist Huntington's Disease Adviser

Debra Robinson

01477 534434

Merseyside branch

All of our branch meetings are informal and provide a relaxed environment for people to talk if they wish. On occasion, we have health care professionals giving talks on many topics relating to Huntington's disease, and the local Specialist Huntington's Disease Adviser, Anita Daly also attends meetings when she can.



When we meet

We meet the last Wednesday of the month except in August and December between 7:30pm - 10.00pm at Kavanagh Place.


Kavanagh Place

1 Rumney Road


L4 1UB



Key contact


Chair: Christine Clarke
07789 484 429
Secretary: Shelagh Lucking
Treasurer: George Thorman



Specialist Huntington's Disease Adviser

Anita Daly
0151 487 6514

Preston support group

The Preston Support Group have been together since 2009. We are there to support each other and offer advice. We meet regularly and outside speakers attend to provide free expert advice and information. People attend as and when they want or as and when they can.


We have seasonal themes; i.e. Easter and Christmas quiz’s, cream tea in June and social events outside the meetings.



Where we meet

Our meetings are currently held virtually/online. 



When we meet

Generally on the first Wednesday of each month, from 7.00pm to 9.00pm.



Specialist Huntington's Disease Adviser

Theresa Westhead
01942 864 645