Huntington's Disease Association Northern Ireland

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Huntington's Disease Association Northern Ireland HDANI is a NI registered charity which supports people affected by Huntington's disease. We provide i HD is a genetic disease. There is no known cure.

Huntington’s Disease (HD) is a rare, inherited and highly complex neuro-degenerative disorder, with a fluctuating progression, affecting both mind and body. It is caused by a faulty gene which progressively destroys the central area of the brain affecting all aspects of an individual’s life including physical, cognitive and behavioural processes. Because the damage caused by HD begins inside the brain, an individual with HD may look relatively able bodied until the later stages of the disease. As well as the physical and mental symptoms of HD, many years of fear, shame and isolation caused by stigma has had a devastating effect on individuals and their families over successive generations. Huntingtons Disease was named after an American doctor called George Huntington (1850-1916). George Huntington spent a lifetime studying this specific medical infirmity but still worked as a general practitioner in medicine. He was never on a medical faculty nor did he do any other research but he will be remembered for making the most lucid and accurate description of this illness. HD is described as a ‘neuro-degenerative’ disorder as it damages or kills the neurons in the brain. Every child of an affected parent has a 50% chance of inheriting the gene mutation which causes the disease. A simple blood test indicates whether a person has tested positive or negative for the gene mutation. If tested positive, the individual will develop the disease at some point in their lifespan. HD affects males and females equally
HD affects approximately 1 in 10,000 individuals in Europe and is sometimes referred to as a ‘rare’ or ‘orphan’ disease, although a recent statistical report from 2010 indicates that the prevalence of HD in the UK has been severely underestimated and that the true figure is probably double the previous estimates. HD usually affects adults between the ages of 30-50 and is often described as an “adult-onset disease”. Although it can occur anywhere from age 2-70, it is less common in children and older people. It is said that those who develop HD earlier in life may find their illness progresses at a faster rate. Life expectancy from onset is approximately 15-20 years. HD causes progressive deterioration – physically, cognitively and emotionally until the individual becomes dependent on the help of others. No two patients’ condition progress in exactly the same way. Symptoms can vary widely and the rate of progression is difficult to predict with any real accuracy. HD is referred to as a ‘disease of families’ where several family members from different generations may be symptomatic at the same time. As a ‘disease of families’ no family member is left untouched. But recent research shows exciting advancements in treatments and medication. See our Research page for more information. Most HD sufferers in Northern Ireland are cared for at home by family members. It is essential for carers to develop a comprehensive understanding of the complexities of HD and how it can impact on all members of the family.

HDANI Staff will be taking a day to rest and recover from the confernce on Monday 19 October to ensure when they are bac...
01/10/2026

HDANI Staff will be taking a day to rest and recover from the confernce on Monday 19 October to ensure when they are back to work they are working at their best for all their service users.

We will be back on Tuesday 20 October at 9am.

If you need help....*
For information and resources on HD visit our website www.hdani.org.uk
If you need emotional support in the interim be advised that Lifeline provide trained counsellors 24/7 on freephone 0808 808 8000.
If you require out of hours social work services because you have serious and immediate concerns in relation to an adult or child's safety contact 028 9504 9999 this covers all of Northern Ireland out of hours and holidays

Chest Heart & Stroke Health Checks for Positive Ageing Month October 2026As part of Positive Ageing Month, free health c...
30/09/2026

Chest Heart & Stroke Health Checks for Positive Ageing Month October 2026

As part of Positive Ageing Month, free health checks are being offered to anyone aged 50+.
Booking is essential.

Tues 6 Oct Craigavon:
Health Checks (Chest Heart & Stroke Health Screening) at Brownlow Hub appointments available between 9am – 4.15pm. FREE Blood Pressure & Atrial Fibrillation Checks available for people aged 55 and over. Booking is essential. To book an appointment call Brownlow Hub on 02838313630
Cost free


Tues 13 Oct Craigavon:
Health Checks (Chest Heart & Stroke Health Screening) at Brownlow Hub appointments available between 9am – 4.15pm. FREE Blood Pressure & Atrial Fibrillation Checks available for people aged 55 and over. Booking is essential. To book an appointment call banbridge Leisure Centre on 02840628800
Cost free


Tues 27 Oct - Keady:
Health Checks (Chest Heart & Stroke Health Screening) at Tommy Makem Centre, appointments available between 9am – 4.15pm. FREE Blood Pressure & Atrial Fibrillation Checks available for people aged 55 and over. Booking is essential. To book an appointment call the TMAC on 02837521810
Cost Free

Appointments for November will be released at 10am on Thursday 1st October.
The code is: DRM1126
LINK FOR BOOKING SYSTEM: booking.wellcheck.nichs.org.uk

Hi. We need your help to make sure healthcare professionals across Northern Ireland get the best training possible on Hu...
30/09/2026

Hi.

We need your help to make sure healthcare professionals across Northern Ireland get the best training possible on Huntington’s Disease!

We are hosting an upcoming Health Professionals Training Event, and we want as many GPs, social workers, OTs, mental health and key workers to attend as possible.

How you can help?

A personal request from a patient or family member makes standard event invites stand out. Could you take a moment to contact your own GP, social worker, or health team and encourage them to register?

Quick message you can forward to your healthcare team:

"Hi [Name/Team], HDANI is hosting a dedicated training session on Huntington's Disease for healthcare professionals on 16th October from 12.30-4.30 in the Everglades Hotel, L/Derry. As someone affected by HD, I’d love for our local team to attend. You can contact [email protected] for more info"

23/09/2026
Five Years of ImpactFive years ago, the HD Community Advisory Board (HD-CAB) was created as a collaboration between  the...
23/09/2026

Five Years of Impact

Five years ago, the HD Community Advisory Board (HD-CAB) was created as a collaboration between the European Huntington Association, International Huntington Association and HDYO with a simple but powerful goal: to make sure the voices and experiences of the global Huntington’s disease community are heard, valued, and represented.

Since then, 47 advocates from 29 different countries have helped bring the community voice into conversations with researchers, industry, regulators, and other decision-makers. From clinical trial design and research priorities to regulatory discussions and patient engagement, the perspectives shared by HD-CAB have helped shape conversations and challenge the way decisions are made.

To date, HD-CAB has:

Facilitated 20 advisory boards with 11 companies

Hosted an international roundtable discussion

Created a document review program to increase the community involvement with and input on research and drug development (ex. Protocols, communication plans, consent forms, etc)

None of this would be possible without the support of the amazing advocates who are always willing to share their perspectives to help move research forward in a purposeful and patient-centered way.

We are also grateful for the partnership between our organizations. This is a true example of how associations from around the world can come together to make a difference on behalf of the communities we serve.

We also want to thank the researchers, industry leaders, and everyone who has listened, collaborated, and opened the door to meaningful change for the HD community.

Five years later, the impact is clear: when the community has a seat at the table, better conversations happen—and better decisions follow.

Thank you to everyone who has been part of this journey. We’re proud of what we’ve accomplished together and excited for what comes next.

Here’s to the next five years of collaboration, advocacy, and making sure the HD community’s voice is never left out.

https://hd-cab.org/

🌸 Carer Support Service – Health & Wellbeing Morning 🌸Are you a carer looking for information, advice, support or simply...
23/09/2026

🌸 Carer Support Service – Health & Wellbeing Morning 🌸

Are you a carer looking for information, advice, support or simply a chance to take some time for yourself?

Join the Carer Support Service, in partnership with Agenda, for a special Health & Wellbeing Morning at Donaghadee Community Centre.

📅 Friday 25 September 2026
⏰ 10.30am – 12.30pm
📍 Donaghadee Community Centre

There will be lots of information and support available, with stands covering everything from falls prevention, arthritis and mental health to dementia, cancer support, energy advice, community support and much more.

💆 Hand massages
🎨 Craft activities
🎵 Music throughout the morning
☕ Refreshments available

Whether you’re looking for practical advice, support, information or just a friendly chat, call in and find out what support is available to you.
Everyone welcome! 💜
📧 For further information: [email protected]

Andy Irvine: Woody Guthrie, Bob Dylan, and meTrad and folk great Andy Irvine has released Devoted, a new album on which ...
18/09/2026

Andy Irvine: Woody Guthrie, Bob Dylan, and me

Trad and folk great Andy Irvine has released Devoted, a new album on which he covers the songs of Woody Guthrie. We spoke to him about his long distance friendship with the late singer and why Woody will never go out of fashion

Right about the same time a young buck from Minnesota called Bob Dylan was making weekly pilgrimages to upstate New York to visit an ailing Woody Guthrie, another young buck thousands of miles away in London was also communing with the great folk singer and activist.

Andy Irvine, founding member of Planxty and trad and folk great, was in his late teens when he began writing letters to Guthrie as he lay in a hospital bed in Greystone Park Psychiatric Hospital in New Jersey, battling Huntington's disease.

Guthrie, who finally succumbed in 1967, was the firebrand Oklahoma protest singer of dustbowl and depression USA. His rousing and often satirical songs about mass migration, political skullduggery, economic inequality, and the search for dignity still resonate decades later.

He remains a powerful throughline for musicians such as Bruce Springsteen and Billy Bragg, while Carlos O'Connell of Fontaines D.C. has "this machine kills fascists emblazoned" on the front of his keyboard, inspired by the legend carved into Woody’s own battered old acoustic.

Irvine, now years 84 years old and still very much on the road and recording music, had discovered Guthrie’s music a few years previously and, just like Dylan, it was to have a profound lifelong effect on him.

In fact, you might say he has composed his final letter to Guthrie with the release of Devoted, a new album on which he, his old friend Dónal Lunny, Bruce Molsky, Mike McGoldrick, and Rens van der Zalm, put a very Irish spin on Woody songs like Buffalo Skinners, Tom Joad and Mister Charlie Lindbergh.

Speaking from his home studio in Enniscorthy, Irvine takes up the story. "Writing that first letter was a last resort because the world was a much bigger place back then. There was no way of finding out where someone called 'Woody Guthrie’ was. So I addressed the letter ‘Woody Guthrie, USA’ and I waited in hope but it came back six weeks later saying insufficiently addressed . . .

"Then after that everything happened quite quickly. First of all, I found a record of his called More Songs by Woody Guthrie by Cisco Houston, then I met Jack Elliot and I was introduced to Pete Seeger and he told me where Woody was . . .

"It would have been just before Dylan began visiting Woody. I was aware of Dylan from slightly earlier than most people and I think I was in touch with Woody before he was."

The young Irvine dutifully began writing more letters but because Woody couldn’t write back due to his illness, a couple called Sid and Bob Gleason, who looked after him at weekends, replied on his behalf.

"Sid wrote back to me immediately and I will always remember her first letter said ‘Dear Andy . . . I hope you don’t mind me calling you Andy but Andrew sounds just a little bit official’. So I became Andy at that instance."

It is another great example of the almost magical confluence of serendipity and fate that seems to have blessed Irvine throughout his life.

Born in London in 1942, he began life as a child actor on TV and film but is best known, alongside Christy Moore, Dónal Lunny, and Liam O'Flynn, as a founding member of Planxty, the seminal group that transformed Irish traditional music for a new generation.

His long career also saw him join Sweeney’s Men when he followed his muse to Dublin in the mid-sixties and he also recorded one of the greatest Irish albums of all time, 1976’s Andy Irving & Paul Brady. He is credited with broadening the horizons of Irish music with the introduction of the rhythms and melodies of the Balkans that he gathered on his lifelong travels.

And now Devoted arrives at a time when Guthrie’s songs are as keenly relevant than ever, with a new tide of fascism and far right ideology unleashed. "It’s been like that for many years but it keeps getting worse and worse," Irvine says. "It wasn’t a reason for making the record but I was aware of the fact that Woody has never gone out of fashion, the songs he wrote and the stories he told are as valid today as he were when he wrote them."

There have been tribute albums of Woody songs before, most notably Folkways: A Vision Shared, which featured Springsteen, Wilco, Billy Bragg, and U2 but Irvine was set on making an indelibly Irish album of the great man’s work.

The playing on Devoted is, of course, beautiful as Woody’s sparse, one-chord, scratch guitar songs are rebuilt as pocket symphonies of sweet folk and trad. It brings it all back home as Appalachia goes back to its Celtic roots.

But what would Woody himself make of it all?

"Hahaha. I think he would say it is too complicated," Irvine laughs. "Well, who can say but Woody liked simplicity and I am a bit the opposite. I like complicated so that may have been a criticism from him of this album. I hope and think he would have liked it."

He adds, "When I’d write to him, I used to make tapes for him with Rambling Jack Elliot and Woody would sing along to them so I think he would have sung along to this record too."

Sadly, he no longer has those tapes or the letters Woody sent to him. "Unfortunately not. I lost all those letters about forty years ago and when you mention it now, I feel like weeping."

Woody still has a profound effect on Irvine, philosophically and politically – it even led to a very Bob Dylan moment for the young Irvine. "Yeah, yeah. I took him on 100%. Everything he said, I agreed with. I even pretended to be Woody once. I was hanging out in this small town in England because I was stalking a young lady.

"These two boys came up to me and said, ‘who are you and why are you hanging around?’ and I immediately put on this Oklahoma accent and said 'my name is Woody . . . ‘ and they were thrilled - this guy from a long distance away who played the guitar and sang!

"It was a great friendship which nearly had a disastrous ending. We were stopped late at night, the two boys and me, by a plainclothes policeman and he said ‘who are you?’ And I thought ‘what am I going to say?’ and I heard myself saying, ‘I’m Woody from Oklahoma . . . ‘ He didn’t ask me for my passport or anything and told us to go home because it was late.

"My parents and me were staying in this house with friends and the next Sunday, I came downstairs and who was there - only the plainclothes policeman! It could have been a total embarrassment. He said, ‘haven’t I met you somewhere before?’ and I said, ‘oh no, nooooo, nooooo!’ I never pretended to be Woody again!"

When I remark that Mark Ellis aka Flood, the English music producer who has worked with Depeche Mode, U2, PJ Harvey and Nick Cave, seems a curious choice to produce Devoted, Andy has another surprise in store.

"He’s my son in law. He’s married to my daughter, Willow, so that made it a little bit easier,. I’ve never worked with him before and the sessions were really good. It took him a while to get into my head. He did come up with a few things that might have been good for someone else but weren’t right for me but he worked really hard. He’s a perfectionist."

Out of the new generation of Irish acts - Madra Salach, the Mary Wallopers, Lankum, The Scratch and the more pop-attuned Amble and Kingfishr - who are carrying on Irish music traditions, he singles out Ye Vagabonds as a personal favourite.

"I’ve played with them a few times. I really have to listen to those other bands you’ve mentioned because people keep asking me about them and I haven’t got an answer."

As a parting glass and to bring it all back home, I ask Andy did he see Dylan play Dublin in ’66?

"No, I didn’t. I was away and later everybody told me that all he was saying was ‘where’s Andy Irvine? Where’s Andy Irvine . . . ?’, which kinda thrilled me, as you can imagine. It sounds far-fetched but a number of people told me the same thing.

"But there was no way of getting in touch with the man so I missed him and that was that."

Hasn’t Andy Irvine ever heard of the lost art of letter-writing . . . ?

Devoted is out now. Details of Andy’s upcoming tour dates are on andyirvine.com.

Huntington's Disease Association of Ireland

Your support really does make a difference! See below a story of how from Jeans for Genes UK
18/09/2026

Your support really does make a difference! See below a story of how from Jeans for Genes UK

Your support really does make a difference!

Meet 3 year old Ralph – a vibrant little boy who was diagnosed with PTEN Hamartoma Tumour syndrome.

Parents Bernice and Ryan also recall Ralph’s journey:

"By this time Ralph was 8 months old and not hitting his developmental milestones. It took him a very long time to be able to hold his head up (due to the size and weight of it), to roll and to crawl. Ralph began physiotherapy to help with these areas at the age of 5 months old.

Ralph continued to be heavily monitored by his health visitor and paediatricians during his first year. Due to his head size increasing much faster than the rest of his body was growing, his paediatrician requested genetic testing. We, of course, agreed as we wanted to find out if there was anything that we could learn about and help with. The genetic testing was done in February 2024 before Ralph turned one in March, it felt like the longest wait in the world, but we knew it would take some time. Fast forward to August 2024 and I received a phone call from the paediatrician explaining that the tests had come back and show that Ralph has PTEN Hamartoma Tumour syndrome."

You can read Ralph's full story and how Parents Bernice and Ryan recall his diagnoses at:
https://www.jeansforgenes.org/ralph.

Funding from Jeans for Genes Week helps to fund charities that support families like Ralph's.

"As a family this diagnosis has changed everything but with the help and support of the PTENUKI community we know that we are not alone. We are so grateful for the work Jeans for Genes do in helping to fund the work PTENUKI as we rely so much on their support.”

Your support really does make a difference to children like Ralph.

You can visit our bio or website jeansforgenes.org for more information.

Good afternoon, Home heating oil support scheme opened last Wednesday (9th September). It will be open until November.Al...
16/09/2026

Good afternoon, Home heating oil support scheme opened last Wednesday (9th September). It will be open until November.
All disabled people who are using heating oil and are in receipt of Disability benefit (PIP, DLA, Attendance allowance) automatically qualify for £100 oil voucher per household doesn’t matter how much they earn or how many assets they have.



You can read more about the scheme on NI Direct website (https://www.nidirect.gov.uk/services/apply-online-home-heating-oil-support )

To apply for the scheme press on the link below

https://dfc-digital.nidirect.gov.uk/claimhomeheatingoilsupport/

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Belfast
BT119AG

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

Telephone

+447921513561

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