Council buildings in Lifford, Donegal Town and Milford will be lit up in purple next week as part of a global campaign to raise awareness of Huntington’s Disease.
Huntington’s Disease is a rare hereditary degenerative condition which affects more than 750 people in Ireland and Huntington’s Disease Association of Ireland (HDAI) will join other HD organisations around the world next week to raise awareness for Huntington’s Disease from 15 – 19 May 2017.
Around 4,000 people in Ireland live with a high genetic risk of inheriting the disease and each child who has a parent with HD has a 50% risk of inheriting the gene that causes Huntington’s disease.
Huntington disease is a family disease devastating for both the body and mind. The symptoms, which may include uncontrollable jerking movements, slurred speech and progressive cognitive and emotional impairment, usually present between the ages of 30 and 50. Symptoms gradually worsen over the 10‐25 year course of the disease. Eventually, people with HD will be completely dependent on others.
It is hoped that greater awareness will decrease stigma surrounding the disease and encourage families impacted to seek support. Ireland lags behind most European countries with regard to HD research and specialist services. Dedicated clinics and specialist services are critical to pursue research and improve standards of care.
The HDAI supports families living with HD through counselling, support and information. HDAI’s Chairperson Thomas Lillis said “we are delighted these prominent buildings in Donegal have agreed to take part in the 'Light Up For HD'. It is a disease that is still widely misunderstood so anything that can be done to highlight the impact it has on people's lives is much appreciated”.
“This is a global campaign with countries in North America and all over Europe taking part, so it's brilliant that buildings in Donegal and across Ireland can add their voice to raising awareness of this devastating condition.”
Last year many iconic buildings in Dublin and around the world lit up to support the #LightItUp4HD campaign, see here.
A very significant event for the Huntington’s disease (HD) community takes place in Rome next week. Pope Francis is the first pope to recognise Huntington’s disease (HD) and will meet the world’s largest gathering of people with HD at a special audience in the Vatican on Thursday 18th May.
Irish families will be among thousands attending. Dr Niall Pender, Principal Clinical Neuropsychologist at Beaumont Hospital will also travel to Rome in solidarity with Irish patients and family members and will meet international HD experts attending the event. Pope Francis is the first Pope or Head of State to ever mention the condition. Shrouded in stigma and secrecy, families coping with HD often hide it away.
A group of HD advocates using the name - HDdennomore – pronounced ‘Hidden No More’ have organised this event including Charles Sabine, Gene Carrier and ex NBC War Reporter who explains the purpose here.
This event will be live streamed via the Vatican YouTube channel. For further information on the event see here
For more on Huntingtons Disease visit www.huntingtons.ie.
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