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HUNTINGTON’S

HUNTINGTON’S DISEASE ASSOCIATION DISEASE ASSOCIATION NORTHERN IRELANDNORTHERN IRELAND Families at the heart of all that weFamilies do at the heart of all that we do

HUNTINGTON’S DISEASE ASSOCIATION NORTHERN IRELAND

Families at the heart of all that we do

Huntington’s Disease Association Northern Ireland Newsletter

Summer 2013

Message from the Chair Dear friends and supporters, 2013 looks like being a pivotal year for HDANI. We have made astounding progress in recent years but we need to look more carefully at the reality of the current situation. Externally, the continuing recession and the Welfare Reforms cause great concern; and the new “Transforming Your Care” system is going to impact on us all, although exactly how is still unclear. But these are very stressful and difficult times- and it’s going to stay that way! Internally - as an Association - and as individuals - we have a lot of tough decisions to make which will affect HDANI’s entire future; so I am going to speak bluntly. We have reached a crucial stage in our development and we need to maintain that progress if we are to avoid the fate of so many other charities that have not survived. To do so, it is absolutely vital that Members come forward to serve on the Board- including in key positions. For example, I have now been

active in HDANI for over 25 years and, like others on the Board, I am “burnt out” after years of working without respite. I intend to step down from the Board in September 2014, so HDANI will need a new Family Member as Chair. We also urgently need a new Treasurer! I would ask you all to think seriously, between now and Conference, about the true value of HDANI’s work and its future, and to volunteer to share the load, including at Board level. There is so much now that we never had when we started the Association all those years ago- the wonders of the internet; the real prospect of treatments; networks of HD Families extending not just across NI but across the whole world- that young people, who are at home in this new world, must take up the challenge of taking the Association forward. Meanwhile, if we are to survive financially we need to make an extra effort on fundraising. So please send your ideas, and offers of help, to Errol or myself.

Marilyn Kerr (Chair)

Contact: Member Services and Newsletter: Errol Walsh Tel: 028 2177 1812 Email: errol@hdani.org.uk Telephone Support Service: Pat McKay Tel: 028 90221950 and Errol Walsh Tel: 028 21771812 Youth contact: Tel: Cat Martin 07785 332063 Email: hdyo@hdani.org.uk HD Nurse Specialist Team: Belfast City Hospital Tel: 028 9504 7930

Website: www.hdani.org.uk

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Sponsorship Many thanks to SDC Trailers from Toomebridge for their generous monthly donations to HDANI

St. Comgalls Youth Club in Antrim has nominated HDANI as their charity of the year!

Many thanks to The Abbey Centre branch of Marks & Spencer who have raised almost £5,000 for HDANI already in 2013 through a whole series of events including the Belfast Marathon, Belfast to Dublin Cycle Run, Bag Packs, Pub Quizzes, and a Football Match. Events to come include ‘Come Dine with Me’, a couple of Boat trips on the Lagan, a Gala night, some more bag packs and much more!

The club have had some expensive renovations to the building recently but have still found the time and generosity to support HDANI and the proceeds of this year’s fundraising efforts by the St. Comgall’s youth will be split between the Youth Club and HDANI! Now there’s generosity of spirit for you…

Thanks to Paul Leeman and Crusaders FC for their assistance with the football match and thanks to Lagan Boat Company for their very generous discount of the Marks & Spencer boat trips!

Donations & Fundraising - 21st March - 10th July 2013 Many thanks to everyone who has contributed to our funds in whatever way you have elected to do so. At present we have eight members who donate by direct debit each month which brings in £96.00 per month.

It can be as little as £2.00 or as much as you want. Also, if you are a tax payer and fill in a gift aid declaration, for every £1.00 you donate the tax office gives us an additional 25p. Errol can provide bank mandates for standing orders and gift aid forms if anyone is interested. Tel: 028 2177 1812 or Email: errol@hdani.org.uk

Could we encourage you or any of your families or friends to consider donating this way?

Legacy

I Rountree – imo the late Mrs Rosalind Watson - £25.00

Mrs M Kerr - £10,000.00

Donations

Imo the late J Harkin £200.00

Donations via Bank - £304.00

K Loughlin - £30.00

Odd Balls Golfing Society £500.00

Willowfield Ladies Bowling Association - £100.00

T Thompson - £115.00

N Ward - £20.00

D Smith - £10.00

Imo the late Mrs Agnes McMullan - £225.00

K Loughlin - £50.00 Imo the late Mrs M Kilfedder £247.00 Imo the late Mrs Agnes McMullan - £40.00 E Walsh - £75.00 M Watson - £5.00

Ulster Bank - £300.00

G Miscandlon - £5.00 O Harper - £50.00

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Mr & Mrs Duffy (Wedding Favours) - £200.00


Anon - £100.00 Donations via Virgin Money Giving - £320.82

J Crooks, Belfast Marathon £150.00

J Calderwood - £106.20 Wineworld - £12.77

Allstate Insurance, Strabane Fundraiser - £435.00

R Moore - £48.78

Anon - £100.00 S W L Magee - £100.00

N I Bikers & Trikers, Sponsored Motor Cycle Run - £276.00

C and I Watson, imo the late Ken and Ros Watson - £500.00

Niall Ward, Antrim (three events) £483.00

Events

Katrina Ward, Antrim, Sponsored walk £133.00

I Haywood - £15.30 Niall Ward - £51.62

Omagh Support Group, ASDA Bag Pack - £720.00

Penny Jars The Moore Family – £5.26 N Alberts - £16.55

Bronagh Boyd, Belfast Marathon, raised over £500.00

(The wrong amount was printed in Spring edition apologies!)

Wristband Sales

Collection Boxes

Belfast Support Group - £50.00

Mr W Turner, Swatragh Fundraiser - £4,405.70

Armagh Support Group £203.50

Huntington Harriers, Belfast Marathon - £1,080.00

D Farry, Trillick - £100.00

The Young Ambassador of the Month Award goes to Niall Ward of Antrim who raised nearly £500 by organising three separate events in a few short weeks… plus a collection box and a personal donation!

Skydive in Garvagh (see link to the Skydive video www.youtube.com/watch?v=gi2wEM-sq6g ) Pub quiz in Antrim Collection Box

Awareness day/collection at Costa Coffee, Junction One in Antrim…

Well done Niall and friends and many thanks from your efforts!!!

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What the Board’s been doing Since the last Newsletter, we have had the pleasure of welcoming our HD Specialist Nurse Majella McConville to the Board and we look forward to welcoming Roisin McKeating (Head of Human Resources, Northern Ireland Audit Office) to the board at our next meeting: both will bring very valuable skills and knowledge, and we are extremely grateful for their commitment. You will have noted in Marilyn’s ‘Message from the Chair’ that the board has been under considerable strain and pressure in recent times, to the point where it was felt that HDANI needs a managerial post (initially part time) to oversee and co-ordinate the implementation of the revised Strategic and Business Plan on which we worked so hard between November 2012 and February 2013.So, the board is working on a job description for this proposed post; as well as on a work plan for Catherine Martin, to help set up the youth network that she has been working on over the past six months along with our young people. Marilyn has completed the accounts for 20122013 which are currently with our accountants and will be presented at Conference. HDANI board representatives have contributed to the on-going consultation on the Healthcare ‘passport’ being prepared under the auspices of the Royal College of General Practitioners and supported by the Patient & Client Council. (See “Your Health Care Information” in ‘HDANI Shorts’) Majella and Dr. Gavin McDonnell met with Professor Morrison to discuss how the Regional

Medical Genetics Unit database of HD cases could be used to identify the general areas where HDANI should focus its support efforts. Errol, Grace, Marilyn and others have been working on the agenda and arrangements for the Annual General Meeting and Family Carer’s Conference on September 20th, where USA author and HD care specialist Jimmy Pollard will be the Key Speaker. Christine and Errol have been working on funding, programme and arrangements for a Workshop on 19th September for Health and Social Care professionals to be led by Jimmy and supported by the Public Health Agency’s Research and Development Division. Meantime, I have been representing HDANI (through the Northern Ireland Rare Disease Partnership) in the Neurological Conditions Network, chaired by Michelle Tennyson. This new group includes representatives from different Trust areas, the various health and social care professions and patient organisations. It is working to make improved provision for all those affected by neurological conditions. The Network will soon have a core team of staff, to take forward the work programme, including better information for patients and carers, flowing from the “Speak out for Change” survey, which our Huntington’s Disease Support Groups completed, back in 2011.

Christine Collins (Vice Chair)

Conference 2013 The charismatic Jimmy Pollard from the USA (author of the fantastic HD caregiver’s handbook ‘Hurry Up and Wait’) has now been confirmed as keynote speaker at this year’s Family & Carer’s Conference & AGM at La Mon on Friday Sept. 20th (booking forms and conference programme are enclosed with this issue of the Newsletter). If you’re caring for someone with HD you really need to hear Jimmy speak

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about understanding the progression of HD… he’s an inspiration! We’re also very grateful for the support of The Public Health Agency’s ‘Workshop & Conference Support’ fund which is enabling us to take full advantage of Jimmy’s visit and run a unique workshop for health and social care


professionals working with HD families on the day before Conference. If anyone in your family has any health and social care professionals supporting them please urge them to contact HDANI and sign up for this unique and insightful presentation! There will also be a speaker (tbc) to discuss the many complex and confusing new changes to the benefit system. This will be an excellent opportunity for you to put specific questions about your own situation to the speaker should you have any. It has been decided that the HDANI-YO steering group will plan their own Youth Conference at a later date so the Family & Carers Conference this year will be for adults of 18 years of age and above. As you will have read in the Spring issue of the newsletter there will be a £30 per head charge towards the cost of Conference this year to help

relieve the pressure on our dwindling reserves. At the same time, we’d like to reiterate that we want everyone to be there and no-one to feel that it’s beyond their means. So if anyone should find this a real obstacle in attending conference please contact Errol (in strict confidence) 028 2177 1812 and we should be able to find a solution. If you’re not an HDANI member it’s free to join… no obligations… but your membership will help swell our statistics and help with lobbying and campaigning for better services. Just contact us by phone, email or post for your membership form. Finally… if you’ve bought ballot tickets for the draw at Conference… please return the stubs (with payment) either at or before conference or they won’t be entered in the draw. Thanks as always to Sharon Rosbotham for sourcing the prizes and to the companies who gave so generously!

In Memoriam: Ken Watson It is with great sadness that I have to report the passing of an old friend and loyal member of the Belfast support group, Ken Watson, who passed away peacefully in his sleep in the early hours of Saturday 13th April 2013 at the Marie Curie Hospice in Belfast. Ken was 80 years young and, only two months before, had buried his wife Ros who died from HD. Ken had been ill for some time but always maintained a cheerful outlook even though he was in no doubt of his prognosis. I think he was relieved and at peace with the idea that his beloved wife Ros had passed before him and that he had supported her faithfully through every step of her long and difficult journey with Huntington’s. He left behind a successful lifestyle he’d built over 40 years in Southern Africa to return to N. Ireland so that Ros would receive appropriate care and attention and always made her care and welfare his first priority.

failed him. His eternal optimism and unfailing good humour was an inspiration to everyone around him and he will greatly missed and very fondly remembered by family & friends. His sons, Ian, Colin & their families would like to thank the staff at the Stewart Memorial for their support over the years, the members of the HDANI and the Marie Curie Centre for their care in his final days.

Ken was an enthusiastic volunteer for HDANI and took every opportunity to raise awareness and funds for the Association. He also served on the board of trustees for a short while until his health

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Scottish Summer Camp 15th – 19th July, Benmore, Dunoon Ten young people from HDANI attended the SHA Youth Project annual summer camp this year for five days of fun, games and outdoor activities, (including Kayaking, Climbing & Abseiling, Caving, Gorge Walking, Sailing, Swimming and an evening of inflatables at Dunoon Stadium) and, of course, the HD festival. The theme of the festival this year was “Coping well in HD” Young people often appear to cope well on the surface but often underneath there may be difficulty in expressing difficult emotions like anger and even normal emotions like happiness. An experienced external facilitator was brought in to host a workshop on how to manage emotions more effectively in the body, and how to identify triggers that could cause explosive emotional reactions. We finished off the week with a disco,

award ceremony, a ‘wish making circle’ and an amazing fireworks display. There is no doubt about the immense value of these annual camps in helping young people living with HD to network with each other, share experiences and remind each other that they are not alone on the HD journey. Peer support is vital in helping to reduce any sense of isolation that can have such a negative impact on their lives. Thanks to everyone who made both camps possible- to SHA and HDYO - and to everyone who volunteered their time. Special thanks to Cat who volunteered a week of her time and energy to act as leader for the HDANI contingent in Scotland!

Daniel and some of the Scottish young people showing they aren’t afraid to try new styles…

Euro Camp – Burgos, Spain 7th – 14th July 2013 Angelina Kelly, Fearghal McElhinney and brothers Ronan and Lochlainn Fitzpatrick from Northern Ireland took part in this years European Summer Camp in Burgos, Spain along with 48 participants from 8 other European countries. The young people took part in workshops, education and information sessions, peer support groups and of course the all-important fun activities. The camp was part funded through the European Union Youth in Action fund with the balance met by each of the HDA’s (including HDANI) to help cover the costs of travel, accommodation, transport, activities and food. One of our fun activities took us on a Kayaking trip in the

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Kayaking in the Duraton Gorge Duraton Gorge where we saw a pair of breeding Royal Eagles, Vultures and many other birds and wildlife.


Dr Ed Wild came along for the last few days and gave an update on research and treatment. He also got the group to try their hand at some ‘gene silencing brain surgery’ (we had to use jelly brain, straws and hundreds & thousands as noone was willing to be a guinea pig!) The camp helped young people to talk openly about their experience of HD, their individual risk, how to cope, getting tested, having relationships, why having information about your family history is important to researchers and the hope for the very near future. Our amazing young people

attracted the attention of the national news TV stations and newspapers that came along and found out what we were up to and what HD is. We also made two videos that will be available shortly online via www.hdani.org.uk and www.hdyo.org.. All in all it was a very busy week and the Northern Ireland young people did their parents, HDANI and Northern Ireland proud. Thanks to Paula McElhinney for volunteering as leader of the HDANI group!

Brain surgery!

Euro Camp group photo

HD Awareness Week 2013 (June 10 – 16) The aim was to generate media stories in Northern Ireland and beyond about Huntington’s Disease and to increase awareness of both the week and the disease using social media. Jo Smith from “Vindicat” (who also organised our press launch for the youth and family Engagement Initiative on the Belfast Barge last year) issued a daily press release to 64 media outlets in Northern Ireland (including 17 women’s lifestyle publications and ITV’s Daybreak show). The press release linked the recent international G8 summit with the international HD summer camp in Spain which also had eight participating countries. Three publications (Tyrone Herald / Ulster News, Irish News and the Derry Post) requested interviews and were put in contact with our young delegates from N. Ireland. The Tyrone Herald subsequently ran a story and photograph of its interview with two young brothers from Coalisland in its June 10 issue and The Derry

Post spoke to another delegate from Limavady to run in its 25 June issue. Daily HD facts were mailed to the same media outlets as the press release and were also posted on the HDANI Facebook page generating additional awareness and reaching an audience of 1015 Facebook users.

Ronan & Lochlainn Fitzpatrick from Coalisland

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HD Buzz Shorts The following excerpts from HDbuzz bring you links to the latest HD research online. If you do not have internet access and would like to find out more about any of the articles below simply contact Errol 028 2177 1812 and he’ll be happy to print out the entire article(s) and post them to you.

“The Drugs are Coming” For those who were unable to attend last year’s conference in Belfast you can access Dr Ed Wild’s uplifting message in his presentation online at http://www.hdsa.org/conv2013video1

Lost in translation? New insights into the making of the Huntington’s disease protein http://en.hdbuzz.net/121 The cause of Huntington’s disease is the protein huntingtin, which is made throughout the body. Huntingtin is useful, but in HD, an abnormal form of the protein called mutant huntingtin causes damage, kills neurons and eventually produces the symptoms of the disease. Researchers are looking into the possibility of ‘interfering’ with the process that creates the Huntingtin protein. This research is at an early stage but if it works as well on humans as it does in laboratory models there may be an effective means of preventing the production of the problem protein repeats before they ever have a chance to attack the neurons. There is already an approved drug used in the treatment of cancer and organ transplants to target an existing protein called mTOR which could translate into an effective treatment for HD, but right now there are problems with its toxic effect on the immune system which would prevent its long term use necessary for HD. Major Roche-Isis deal boosts Huntington’s disease gene silencing http://en.hdbuzz.net/122

What is gene silencing? Gene silencing drugs reduce production of the harmful huntingtin protein by preventing cells from reading huntingtin’s message molecule.

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The instructions for making the huntingtin protein - the huntingtin gene - are stored in every cell and is made of DNA. To make a protein, the cell first manufactures a working copy of DNA, from a related molecule called RNA. That ‘message molecule’ is then read many times by the protein-making equipment of the cell, which churns out lots of copies of the protein. This RNA message molecule is the target of gene silencing drugs. The drugs are made from chemicals similar to RNA, and are designed to stick to the huntingtin message molecule but not to other message molecules. Once stuck, the drug tells the cell’s own machinery to dispose of the message molecule, so the protein isn’t made. That’s why gene silencing is also called huntingtin lowering. There are different options for exactly what the drug molecules are made from, and several teams across the world are developing and testing different approaches. So far, we’ve seen gene silencing drugs tested in several different animal models of Huntington’s disease, successfully delaying symptom onset or even reversing symptoms. These groups of researchers are now racing to hone their drugs and begin human trials. A new deal between pharmaceutical giant Roche and a company called Isis which makes drugs for combatting HD, means that not only has Roche committed an initial $30million to Isis to work on the development of HD drugs and 1st phase clinical trials in patients, but if that all goes well another $362 million will be made available to continue its development and licensing. Plus it also gives Isis access to the significant resources and technologies of Roche.

(Related news) Human trial success in gene silencing for MND http://en.hdbuzz.net/131 Gene silencing drugs, which tell cells to stop making the harmful huntingtin protein, are among the top approaches being worked on to fight Huntington’s disease. A human trial


in motor neuron disease (also known as ALS and Lou Gehrig’s disease) using ‘ASO’ gene silencing drugs has just shown the drugs and delivery method to be safe, boosting plans to get clinical trials of these drugs up and running in HD. Any good news about gene silencing is rightly received with eager anticipation by Huntington’s disease family members. But it’s worth reminding ourselves that the drug used in this trial would not work in HD, because it targets a different protein than mutant huntingtin. Drugs for Huntington’s disease will need to be developed separately and undergo safety tests of their own.

Landmark study puts Huntington’s disease trials on TRACK

HD Therapeutics Conference 2013 Updates: Day 1 http://en.hdbuzz.net/123

Careful measurement of brain shrinkage, detected using MRI scanning, was one of the most powerful ways of measuring progression in Huntington’s disease according to TRACK-HD.

HD Therapeutics Conference 2013 Updates: Day 2 http://en.hdbuzz.net/124 HD Therapeutics Conference 2013 Updates: Day 3 http://en.hdbuzz.net/125 The three links above contain too much information to summarise here but if you have no internet access and you’d like a written copy please contact Errol 028 2177 1812

Proposed Huntington’s disease ‘biomarker’ is not useful, new study suggests

http://en.hdbuzz.net/129 Why do we need TRACK-HD?

Many Huntington’s disease families will have become a little tired of hearing about drugs that are effective in animal models of HD surely we want to cure people, not mice or rats or worms? But before we can successfully run more effective clinical trials in HD patients, we have to understand exactly what happens in people as they become sick.

Which signs of HD do we want to try and fix as part of a therapeutic trial? These kinds of questions are particularly challenging because, unlike diseases affecting other organs, it is hard to know whether drugs can really slow down disease process in the brain, hidden as it is within the skull. That’s where ‘observational’ studies come in. Observational studies are those in which patients are studied without giving them any treatments, simply to understand the disease process in great detail.

http://en.hdbuzz.net/127 Every cloud has a silver lining! It’s hard to make progress towards developing new biomarkers if we’re still working on ones that don’t work. Knowing that some biomarkers aren’t useful enables us to focus limited resources on more promising biomarkers. This is how science is supposed to work! Science is cumulative, even when it seems negative. Every study builds on what we knew before, leaving us a tiny bit closer to developing the treatments and running the trials that lead to effective drugs for Huntington’s disease. Studies like PREDICT-HD and TRACK-HD have given us a huge array of potential biomarkers to follow up on. Ruling out one just means we’re one step closer to finding one that does work!

Led by Prof Sarah Tabrizi of University College London, the TRACK-HD study was designed to run like a mock drug trial. People carrying the HD mutation would be studied for a defined period of time (36 months), using a large array of measurements including brain scans, specialized motor measurements and examination by a physician.

A DNA repair protein modifies the stability of long CAG tracts in the Huntington’s disease gene http://en.hdbuzz.net/130

The problem of genetic instability: The basic cause of Huntington’s disease is well established. A repeating segment of three building blocks of the genetic code Cytosine-Adenosine-Guanine (or more simply,

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‘C-A-G’) near the beginning of the HD gene is excessively long in people who develop the disease. The MSH family of proteins scans along DNA (paired strands), looking for errors. The CAG repeat shows great diversity throughout the population, even in unaffected individuals. Normal repeat lengths can range anywhere between 6 and 36, while repeats longer than 40 invariably lead to Huntington’s disease. But the CAG repeat length has other, predictive properties. Not only can the number of repeats determine whether or not a person will develop Huntington’s disease, but it can also roughly foretell the age at which disease symptoms may begin to emerge. The longer the repeat length, the earlier HD onset, on average. In families who carry the mutation, HD sometimes displays ‘anticipation’ - a technical way of saying that disease onset can get earlier with each successive generation. Scientists have discovered that this anticipation can be explained by a biological event called ‘genetic instability’. Instability refers to a tendency for repetitive stretches of DNA to grow throughout an individual’s lifespan. This can cause, for

example, the C-A-G region in the HD gene to get longer. For reasons that are not understood, genetic instability happens more often in some tissues and cell types than in others. For example, while repeat lengths are quite stable in the blood (where samples are collected for HD genetic testing), they often expand in sperm cells. This genetic instability explains why anticipation occurs in HD. Repeats tend to get longer, on average causing children to have earlier onset than their parents. Because this expansion is especially common in sperm cells, expansions are more likely in HD genes inherited from fathers than mothers. The intergenerational effects of genetic instability have been known for quite some time. However, newer studies are shedding light on how it may also affect disease prognosis within individual patients. This is a very complex subject so if you want to read about it more fully please check out the full article online using the link provided above.

HDANI SHORTS Receiving your HDANI Newsletter by Email:

questions and hope to receive confirmation of this shortly.

Obviously, receiving your newsletter by Email is much more cost effective than a hard copy… it saves money on both printing and postage, so if you’re happy to receive your Newsletter this way please let us know at errol@hdani.org.uk

Your Health Care Information:

We understand that some members either do not have access to the internet, or simply prefer to read it in hard copy. This is fine too!

Changes in Welfare Benefits: With all the complex new legislation around welfare benefits we’ve invited a speaker from the Law Centre to attend Conference in September to discuss these changes and answer

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Patient advocate groups have long argued for the recognition of patients and carers as experts in understanding their own unique care needs as well as the need for a tool which communicates and reflects a sharing of core information between patient, carers and health and care staff. Seventy people representing a range of patient and carer groups, health and care professionals and community organisations attended the second RCGP ‘Healthcare Passport Project’ second workshop in Belfast, on 14th May. Following a workshop in September 2011, a pilot version of the Passport was produced, and 380


of these were distributed to patients, carers, carers’ groups, voluntary organisations and healthcare professionals. Feedback suggested a need for some changes in language and layout and, on the basis of that feedback, a more detailed Passport pilot will be developed over the next few months. For a full report on the Workshop topics and outcomes contact Errol (028 2177 1812 or errol@hdani.org.uk)

Stress Buster Advice! I briefly met neuro-psychologist Dr Niall Pender from Beaumont Hospital (Dublin) at an excellent HDAI information day event in Dublin on May 18th. One of the many topics he addressed was the impact of stress on healthy living for everyone, and especially for people living with HD, and he recommended a weblink to the Relaxation and Mindfulness programme which is freely available online to everyone at www.beaumont.ie/marc

It’s described on the Beaumont website as follows and is well worth having a look at! “You have come to the right place to learn about how and why to practice relaxation and mindfulness exercises. Relaxation and mindfulness training are helpful for managing stress as well as helping people cope with physical illness and on-going medical treatment. All of our exercises are recorded by people working in Beaumont Hospital with the goal of helping you feel better. Feel free to listen in to the exercises here, or download them for your personal use.” Thanks to Patricia and Liz at HDAI for another really well run event and the opportunity to participate and communicate across the border!

Please Support Your Regional Support Groups: HDANI Board of Trustees would like to acknowledge the sterling work done by our four support groups in Belfast, Armagh, Limavady and Omagh and thank them all on behalf of the membership for their continued commitment to the Association and to each other. It’s worth remembering that the support groups are the life blood of the Association and the primary reason for our existence. For a variety of reasons, not everyone can make it to their nearest support group but these groups meet regularly to provide emotional and practical advice and support to each other as individuals and families living with HD all over Northern Ireland. It’s that sharing of information and experience that helps to raise vital issues around the country. It reinforces the truism that, while there are obviously many common aspects of the HD journey and parallels of experience along the way, every person and family who lives with HD also has a very different story to tell.

Like most groups within individual communities in every walk of life, the greater the numbers, the bigger the voice! Especially when it comes to raising public awareness and campaigning for change and improvement in the complex services that many individuals living with HD will inevitably encounter at some point in the progression of their illness. HDANI also gratefully acknowledges and appreciates the generous contributions of those who support HDANI’s work in other ways (raising awareness through fundraising events and regular donations). But for those of you who are unable to attend support groups, and who are not HDANI members already, we’d like you to consider supporting the regional support groups by simply becoming HDANI members in order to swell our collective voice. Errol Walsh (membership services and development)

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Regional Support Group Information Belfast Support Group Time: 2pm - 4pm

‘Syndicate 2’, 3rd Floor Grosvenor House, Glengall St, Belfast, BT12 5AD (beside the Europa Bus Centre - handy for train & bus!) First Thursday in the month (except Jan/Feb and July/Aug) Contacts: Pat (028 9022 1950) or Errol (028 2177 1812)

Armagh Support Group Time: 7.30pm

Armagh City Hotel, Third Wednesday in the month (except Jan/Feb) Contacts: Rita (028 3752 6429) or Sylvia (028 3833 8238)

Limavady Support Group Time: 8pm The Classic Restaurant, Main St., Limavady Every 4-6 weeks (ring for confirmation) Contacts: Paula (028 7776 7664) or Errol (028 2177 1812)

Omagh Support Group Time: 8pm

The Wave Centre 18 Holmview Ave, Campsie, Omagh Second Monday in the month Contacts: Megan or Rosetta (028 8077 1649) or Errol (028 2177 1812)

24 hour “Telephone Support Service” Pat (028 9022 1950) and Errol (028 2177 1812) Please note: If no-one is available to take your call please leave a message and someone WILL get back to you ASAP

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Huntington’s Disease Nurse Specialists Belfast City Hospital Tel: 028 9504 7930

HDANI Newsletter Summer 2013  

Newsletter by the Huntington's Disease Association Northern Ireland (HDANI)

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