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Events and News

HD Cafe Evening at Bloomfield Health Services

See Invite for HD Cafe Event at 7pm Wednesday April 5th 2017. Contact info@huntingtons.ie to reserve a seat

Papal Audience for HD families May 18 2017, the Vatican, Rome


HD Seminar March 4th 2016

 Presentations: Dr Ed Wild, Dr Niall Pender, Professor Orla Hardiman

Light It Up For HD

Huntington's Disease Awareness week May 15th -19th, 2017. Iconic buildings including The mansion House, Christ Church Cathedral and some Dublin City Council buildings in Ireland will light up to raise awareness. You can support this international #LightItUp4HD campaign by asking buildings in your area to light up and by sharing images on social media. Contact info@huntingtons.ie for more information.

HDAI joined the international HD community in a campaign to raise awareness for Huntington's Disease by illuminating landmarks during May awareness month. Lord Mayor of Dublin , Criona Ni Dhalaigh showed her support for the LightItUp4HD initiative along with buildings including:  Dublin City Council Civic offices, The Mansion House, The Generator Hostel, Smithfield, Convention Centre Dublin, Bloomfield Health Services and Byrnes Pharmacy, Ballsbridge kindly showed their support.

HDAI Support Meetings

Support meetings give people affected by HD the opportunity to meet others over tea/coffee and scones. The Family Support Officer facilitates meetings, held regionally on Saturday mornings as follows: Dublin May 6th, August 12th, Cork  July 1st,  Limerick April 8th and Longford September 9th Further 2017 dates TBC. Contact HDAI for venue details.

Members Meeting and Respite Weekend

2017 - June 9th - 11th, Cuisle Holiday Centre, Guest Speaker Dr Emma Yhnell, Neuroscience Institute, Cardiff University

Held June 10th-12th, 2016 in Cuisle Holiday Centre with Guest Speaker Jimmy Pollard, International HD Speaker and author of Hurry Up and Wait. See HDAI's Q2 16 newsletter for a summary of the event.

Minding your Mental Wellbeing

Dr Andrea Higgins, Neuropsychologist, Bloomfield Health Services discussed Minding Your Mental wellbeing at the HD Cafe event in Bloomfield 27/04/2016 and wrote an article for Hope Annual 2016.

2016 EHDN and EHA Conference

900+ attendees including people impacted by HD, researchers, clinicians and health and social care professionals attended the conference in The Hague, Netherlands in September 2016. See HDAI's Q3 Newsletter for further details.

National rare Disease Plan for Ireland 2014-2018

The National Rare Disease Plan for Ireland 2014-2018 was launched on 3rd July 2014. Minister Reilly thanked patient groups for their contribution to the Rare Disease Taskforce and said the patients themselves must be at the centre of the new policy.  “At the very centre of the research, the planning and decision making, is the patient. People living with a rare disease and their families, especially parents of young children, are often the leading experts in their diseases.” http://health.gov.ie/wp-content/uploads/2014/07/EditedFile.pdf

HDAI Membership

Your support will help to strengthen the voice of the HD community in Ireland : Membership Form

Support Neurological Care

HDAI join the Neurological Alliance of Ireland (NAI) in calling for essential neurorehabilitation services - We Need Our Heads Examined.

The Dublin Neurological Institute

The Dublin Neurological Institute opens a 'drop in' information centre for people affected by a neurological condition. See www.neurologicalinstitute.ie

Huntingtons Alliance

HDAI and the Huntingtons Associations of England and Wales (HDA), Northern Ireland (HDANI) and Scotland (SHA) formed a UK and Ireland Huntington's Alliance in order to work together to:

  • Shape the debate on the care of people with HD and those affected by it
  • Work with young people from HD families in order to support and prepare them for the years ahead
  • Provide opportunities to share information and intelligence
  • Act collectively where appropriate

The Alliance was launched in London in 2009 and was attended by Sarah Winckless (centre), World Gold medallist and Olympic Bronze medallist and patron of SHA, with Tony Hadley lead singer of Spandau Ballet, and Shane Richie, actor, singer and comedian, both patrons of HDA. The Alliance was also celebrated in Belfast in October 2009 with Guest speaker Mary McAleese (former President of Ireland  and patron of HDAI).

 

President McAleese spoke of the value of comming together to share information and expertise. She recounted her own personal experience of having a friend with HD and the sorrow and misery it brings to families. She reminded people with HD that they did not have to travel the difficult journey alone. Family, friends and Huntington's patient organisations are available to help and support all who are affected by HD.

left to right; Dr McAleese, Pat McKay Chair HDANI, Errol Walsh HDANI, President McAleese, Sarah Winckless SHA patron, John Eden SHA, Cath Stanley HDA, Bill Crowder HDA, Patricia Towey HDAI, Denis Ryan Chair HDAI