Medicine and me: Children - the hidden victims of Huntington's disease


Monday 10 September 2018

Half Day

Venue Royal Society of Medicine
1 Wimpole Street
Organised by

Medicine and Me, HDdennomore Initiative


3 CPD Points

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about this event

This afternoon meeting will focus on the psychological trauma of children in Huntington's families. You'll hear highlights from both professionals and family members. 

Hear from professionals

Professor Hugh Rickards, a Clinical Neuropsychiatrist:

The child will often take on caring responsibilities for the parent, which can result in stress and problems in their own development. They may suffer bullying and victimisation through having a parent who appears ill (or intoxicated) and often develop a huge sense of loyalty to their HD parent and will often jeopardise their own futures in the cause of that loyalty.

Children may have to experience loss or separation in relation to the HD parent, either through marital breakdown, hospital admission, child protection or death.

The biggest problems are anxiety and depression. However, there are more complex problems with attachment that may arise too. Academic progress might be affected and that affects all sorts of other areas including self-esteem and economic potential.

Hear from family members

HD family members will be speaking talk of hidden drug dependency and other addictions, and constant lack of attention;

My dad’s oldest sister also had HD. She was the oldest of the siblings and the head of the house. She was very involved in looking after her own mother when she had HD. Due to the lack of awareness and understanding of the early behavioural and cognitive changes that can occur with HD, her children were neglected. My aunt would spend all her time up with my granny to the point where the children weren’t fed. It also has come out from her daughter more recently that she was quite emotionally abusive towards her. My cousin definitely acts like someone who has been psychologically abused as a child.

Despite anecdotal evidence that these problems are absolutely typical - happening in more HD families than not - no data or statistics can be referred to; the underlying problem is so hidden that there has never been any relevant research.

early bird price 

Patients, their carers and family members attend for free. Medical students and trainee doctors/trainee healthcare professionals can also attend Medicine and me meetings for free.

RSM member rates: £15 - £45
Non member rates: £25 - £75

* Following registration you will be contacted appropriately by email with your booking confirmation, feedback survey and attendance certificate. For full details of the RSM privacy policy, click here.

*Programme is subject to change

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12.30 pm

Registration, tea and coffee


Welcome Address

Sir Michael Rawlins, Past President, Royal Society of Medicine

Session 1

Professor Sir Michael Rawlins

1.00 pm

What is Huntington’s disease?

Dr Nancy Sabin Wexler, President, Hereditary Disease Foundation

1.15 pm

Patient perspective: Living with a parent with Huntington's disease

Mr Matt Ellison, Huntington's Disease family member and Founder, Huntington's Disease Youth Organization

1.30 pm

Carers perspective

Ms Cath Stanley, Chief Executive, Huntington's Disease Association

1.45 pm

Panel discussion

Session 2

Miss Kaji Sritharan, Associate Dean, Royal Society of Medicine

2.00 pm

Me and Huntington's disease

Mr Mark Newnham

2.15 pm

Stress, anxiety and depression management

Professor Hugh Rickards, Consultant, Neuropsychiatry, University of Birmingham

2.45 pm

The fallout of juvenile Huntington's disease

Ms Helen Santini, Specialist Advisor, Juvenile Huntington's Disease, Huntington’s Disease Association

3.00 pm

Panel discussion

3.15 pm

Tea and coffee break

Session 3

Mr Martin Bailey, Vice President, Royal Society of Medicine

3.45 pm

Bridging the gap: A perspective from a Huntington's disease family member turn Huntington's disease researcher

Ms Lauren Byrne, Research Assistant, University College London

4.00 pm

The first successful huntingtin-lowering trial: Results and what’s next?

Dr Edward Wild, Principal Clinical Research Associate, Huntington’s Disease Centre, University College London

4.20 pm


Mr Charles Sabine, Television Journalist

4.40 pm

Panel discussion

All speakers

5.20 pm

Closing remarks

Professor Sir Michael Rawlins

5.30 pm

Close of meeting

register for this event

  • Online registration has now closed
  • Registration will be available on the day
  • Patients, carers and family members, as well as medical students/trainees can register for free


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organiser's details

For information on this event, contact Charlotte MannTel: 020 7290 3919 Email: arrow