All-Island Huntingtons Disease Conference for Patients and Families

Saturday 29th September 2018, Canal Court Hotel, Newry, BT35 8HF

PROGRAMME

9.30-10.30am             Registration/morning refreshments

10.30-11am                 HDANI AGM (all welcome) only those who previously completed a membership form are eligible to vote

11 -11.10am                Conference opening with greetings from HDANI/HDAI

11.10- 11.55am           Dr. David Craufurd: Treatment for Huntington's Disease - Where We Are Now, and Where We Might Be Heading.

11.55 -12.40pm          Dr. Niall Pender: How to Manage the Thinking and Behaviour Changes in Huntington's Disease

12.40 – 1.40pm           Two course lunch (please advise of any dietary issues at registration)

1.40-2.25pm               Lauren Byrne: Fighting public enemies 1 and 2 – A HD research update

2.25-3.10pm                Professor Asa Petersén: Research on Non-Motor Aspects of HD

3.10-3.20pm               Concluding remarks

3.20-3.30pm               Grab your afternoon refreshments and head to a workshop or visit our exhibitors for information and advice

3.30 -5.40pm               During this time there will be a number of exhibitors on hand to offer information and advice which you can visit at your ease

                                                Workshop 1: Siobhan Harding-Lester, Regional Genetics Dept.,

Understanding Genetic Testing for HD

Workshop 2: Deirdre Shanagher, Irish Hospice Foundation

Planning Ahead with A Neurological Condition

HDANI Youth: Meet Ashley at the stand for a chat or join a workshop

A limited number of appointments for free complementary therapies will be available 2pm-6pm. Please ask about availability at conference registration.

Social Event

7.30pm sharp: Saturday evening will end with a 3-course dinner and raffle followed by music in the Granary bar. Raffle tickets can be purchased on the day.

Cost

It costs HDANI approx. £150 per person to provide conference catering and accommodation excluding the cost of speakers, venue hire, equipment, materials as well as staff time etc. The cost of attending on Saturday for HD family members is subsidised by our fundraising and grants.

£10pp day only includes lunch and refreshments
£20pp all day plus 3-course evening meal
£35pp includes day refreshments, lunch, 3-course evening meal, bed & breakfast & leisure suite

Room booking and catering numbers are confirmed with the venue a week in advance which means that any no shows cost our charity valuable money.

Want to stay Friday night too?

If you want to stay in the Canal Court Hotel Friday night please get in touch. HDANI are running a training event for health and social care staff all day so please be aware that there is no programme for family members, no meals provided and no accommodation subsidy but if you wish to reserve a room the cost will be £70 single or £120 double bed and breakfast.

Payment

Payment can be made on the day or in advance via support groups or bank transfer but please bring proof of payment to conference with you.

Lodgements can be made using our account details but please contact Sorcha to confirm booking

Danske Bank Sort Code: 95 06 79    Acc. 300 479 02

Register

If you have any questions about the conference or would like to register email [email protected] or call/text 079 8284 3907

Dr. Niall Pender, Principal Clinical Neuropsychologist, Beaumont Hospital

Niall is a clinical psychologist and neuropsychologist. His work involves the assessment and management of patients with neurological and neurosurgical illnesses or injuries. He also holds a part-time lectureship at Trinity College Dublin, is a Member of the Trinity College Institute of Neuroscience and the Irish Institute of Clinical Neuroscience. Niall is a former president of the Psychological Society of Ireland.  

Dr David Craufurd, Honorary Consultant and Senior Lecturer in Neuropsychiatric Genetics, Manchester Royal Infirmary

Dr. David Craufurd MB BS MSc FRCPsych is an honorary senior lecturer and consultant in neuropsychiatric genetics at the Manchester Centre for Genomic Medicine, University of Manchester and Manchester University NHS Foundation Trust.  Dr Craufurd set up the UK’s first multidisciplinary management clinic for HD, and is actively involved in a number of European and World-wide research projects and clinical trials. He leads the EHDN Behavioural Phenotype Working Group and is a former Secretary-General of the World Federation of Neurology Research Group on HD.