Welcome to the website of The Huntington's Disease Association of Ireland: (HDAI)
providing consultation, information and individualised support to those
diagnosed with Huntington's disease (HD), their families and their health
care team.
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Bernie Moran (Development Officer),
President Mary McAleese
(Patron of Huntington's Disease Association of Ireland),
Catherine Paradise (Chairperson HDAI), and Philip Byrne (Committee Member) at
Áras an
Uachtarain,1999.
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Our information
is regularly updated through our links with the International
and European Associations. HDAI is a registered charity and was incorporated in
1998.
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An Olympic Response to a Charity Challenge
The UK and Ireland Huntington's Alliance consisting of the Huntington's Disease Association of England and Wales, the Scottish Huntington's Association, the Huntington's Disease Association of Ireland and the Huntington's Disease Association of Northern Ireland was launched at a special press conference in London on Tuesday 9th June 2009.
Huntington's disease is a devastating, progressive, neurological condition affecting the brain and central nervous system. Around 6,500 people across the UK and Ireland are affected by the condition and between four and six times that number are at high genetic risk of inheriting the condition, yet it is a relatively unknown illness shrouded in fear and stigma. This year during Huntington's Awareness Week which runs throughout the second week in June, the four charities supporting people with the illness launched their Alliance which aims to address the deficit in public awareness about the condition, by taking a collaborative approach to raising awareness.
The Associations were delighted to introduce at the press launch; Tony Hadley, lead singer of the iconic and re-formed 1980s pop band, Spandau Ballet, together with Shane Richie, actor, singer, comedian and media personality, and Sarah Winckless, World Gold medalist and Olympic Bronze medalist rower, as their Patrons.
Sarah Winckless announced her intention to take a break from retirement to raise awareness and funding for Huntington's Disease, see her press release attached. To support Sarah please click on the link: http://www.justgiving.com/pullforhuntingdons
Sarah's mother has Huntington's Disease, and Sarah is gene-positive for HD. You can read her story at
Please contact Huntington's Disease Association of Ireland at 01 872 1303 or at hdai@indigo.ie if you would like further information.
Download Sarah's Press Release
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RTÉ
Radio One ‘Mind Matters’ features Huntington's Disease
Mind Matters is a science series that looks at
conditions of the human brain, and its ability to function and recover after
trauma. The second series of Mind Matters began on March 6th 2007 at 8.30pm
and featured Huntington's Disease.
In the programme, presenter Ella McSweeney talked to family members and
professional experts on Huntington's Disease such as Prof. Michael Conneally.
For more information see
http://www.rte.ie/radio1/mindmatters/
You can subscribe to the series as a podcast -
the feed is
http://www.rte.ie/radio1/podcast/podcast_mindmatters.xml
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RTÉ
Panel Discussion on Huntington's Disease
On Tuesday 22nd March
2006, RTÉ RADIO 1 hosted a panel discussion on Huntington's Disease which featured on Outside the Box, a programme for and about people with disability. Presented by Olan Mc Gowan, the programme also featured an interview with Rachel Sarah Murphy (Fair City). If you would like to listen to this broadcast, please click the 'Listen Now' link.
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For information on the Nationwide (RTÉ) feature on HD which was shown on 16/2/2004 on RTÉ ONE, please contact the HDAI office.
THE CLINIC
RTÉ
Drama
The RTÉ drama,
‘The Clinic’ plan to feature a HD related storyline in the current series. The series began on September 16th
(Repeat broadcast
Thursday 10th August 00.05hrs)
2005 and ran for ten episodes. It was broadcast at 9.25pm on Sunday night. A new doctor (Dr. Richard Mc Kenna) had joined the team at the clinic and it emerged from episode seven (broadcast on November 6th) onwards that his wife (Annie) has HD.
Dr. Richard Mc Kenna struggled to deal with his wife’s illness, yet trying to keep his home and work life separate. His teenage daughter
(Flossie) was devastated when she discovered that she too could have Huntington’s Disease. Trying to pretend everything
was okay and not accepting help so far has failed. Richard finally came to the realisation that he must face up to his wife’s illness. ‘The Clinic’
was set in a multi-disciplinary Health Clinic in Clarence Street, Dublin.
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‘The Clinic’ contacted us and met with some of our members in order to research this storyline. We are happy to have the opportunity to highlight the traumatic effects
of HD without the need to expose families.
HDAI hope that through greater awareness we can improve patient care and fight discrimination. If you are able to watch the HD storyline on The Clinic, please let us have your comments.
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8.00PM
RTÉ ONE
Read more in the recent issues of Hope
Newsletter.
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Do you watch Fair City? The Fair City team
have been in contact with us and recently introduced
a HD story line
with Joe (Played by Rachel Sarah Murphy). Following our visit to the RTÉ
set Rachel Sarah Murphy called out to our office in order to learn more
about HD and how it affects people's lives.
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Bernie Moran, Rachel
Sarah Murphy and Patricia Towey
on the set of RTÉ's Fair City.
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Newsletter of The Huntington's Disease Association of Ireland
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Contact HDAI for Printed Subscription Details
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| The information contained
on this website is based on how HDAI has advanced since its formal launch
in 1985. The development plan was written following a one-day “brainstorming
session” in 1991 and provides a basis for this information. The committee
adopted the aims in 1994. The advice of Jonathan Pimm, National Social
Service Board Mentor Scheme and Andrew Logue, Disability Federation of
Ireland in shaping this information is gratefully acknowledged. |
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