HUNTINGTON’SDISEASE ASSOCIATIONNORTHERN IRELANDFamilies at the heart of all that we do

Huntington’s Disease Association Northern Ireland NewsletterNewsletter printing is generously sponsored by NIE Staff and Pensioners Charity Fund

Christmas/New Year 2014-2015

Hello to all our members, families and friends.

Firstly I’d like to say goodbye to Marilyn, Christine and Grace who stepped down from HDANI this year and many thanks for all their work and support over the years. Secondly a big welcome to Sorcha McGuinness our new Manager who is now firmly established and getting to grips with the running of the organisation. It can only be onwards and upwards for HDANI in the future with new staff and board members.

Things have been moving forward with the consultation on the implementation of the UK Government’s Rare Disease Strategy which we hope to use in our campaigns for more research and support for HD sufferers and families

in Northern Ireland. The Strategy has committed

to improving

Message from the Chairinformation to patients and carers, better co-ordination of care for those with a rare disease including consultations and treatments available and building on research into those diseases. Hopefully this will bring major changes in the future to all HD sufferers and their families.

To finish I’d like to mention all the family and friends we lost this year and remember them in our prayers.

Wishing everyone a merry and peaceful Christmas and a happy New Year.

Jennifer Warnock

To donate to the Huntington’s Disease Association please text

HDNI 14 £5to

70070

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

Website: www.hdani.org.uk

FUNDRAISING EVENTSLap the Lough

One of our members, Darryl Northrop spent considerable time during the summer training hard for the Lap the Lough cycling event round Lough Neagh in support of HDANI. He raised a whopping £1,280.00 in sponsorship from his friends, family and colleagues and his employers Lloyds Banking Group chipped in a further £500 Donation making a

grand total of £1,780.00!!!! He also made his own spectacular and colourful cycling tunic to raise awareness of HD... check it out! Many thanks to Darryl & Lloyds Banking Group!A gentleman by the name of Andrew Higgins also raised £330 for HDANI in the Lap the Lough event in support of a friend who lives with HD. Thank you Andrew!

Boot Sale (Coleraine)

Ashley Clarke has recently moved to Coleraine where she’s studying Events Management at the University of Ulster. Before term started she organized a boot sale with lots of support from Paula McElhinney and the Limavady support group. Sale items were received from all the regional support groups and the event raised awareness, £ 330.00 in cash and a lot of smiles on a beautiful sunny day!

Cardiff HalfMarathon

Marie Terez Spieght is a carer for Rosetta Donnelly a treasured member and founder of the Omagh Support Group. Marie Terez and her daughter completed the Cardiff half marathon in October this year raising £270 for HDANI... many thanks to them both!!

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Family Fortunes QuizKatrina McVeigh from Co. Down is the daughter of Rosaleen Smyth from Ballykinlar who is a longstanding member of HDANI. Katrina organised three ‘Family Fortunes’ charity events held in a local Ballykinlar bar in October which raised a fantastic £1,603.00! All three nights were well supported and enjoyed by all who took part. The Smyth Family would like to take this opportunity to thank everyone who participated and those who donated prizes to the raffle and, in

particular, to Felim and Garry, the proprietors of the Four Roads Inn who sponsored £100 to the quiz winners. Thanks also to quizmasters Jarlarth Laverty and Kevin Owens who supplied all the equipment and the questions & answers and ensured the smooth running of all three nights.

Many thanks to John & Lynn Black who raised £170 in

the Belfast City HalfMarathon!!

Belfast CityHalf Marathon

Dance Fever (Limavady)Last year I was introduced to a lady called Angela Miller who runs a local Charity night every year called Dance Fever. I had asked if she would keep Huntington’s disease in mind for the following year which she said she would... so in July of 2014 I got the phone call to say that HD had been chosen as one of this year’s charities. We were delighted but nervous as well as I had never danced in public before!

Well at least without a few drinks first... We got our team together and with the help of Hugh McLaughlin we became pink ladies! We had soooo much fun beforehand and on the night. We didn’t win but I think we knew that was inevitable! It wasn’t about winning it was about taking part and doing our bit for HD. The amount lifted on the night for all the chosen charities was an amazing £18,480.

It is unbelievable what Angela and her helpers do and on behalf of everyone at HDANI I would like to thank her sooo much for letting us be part of this amazing event. This was the 5th year of dance fever and to date they have collected £87,000 so hopefully next year will take them over the £100,000. HDANI was presented with a cheque for £3,250.00!!

Tina Stephens

Fundraisers and Donors1st August 2014 - 1st December 2014

Apologies to anyone who may have been omitted in the lists below! We’ve just changed our accountants and some of the

usual personal details may have gone astray.

DONATIONSAngela Masterson £20.00Dave and Danielle Scanlonin lieu of wedding favours £200.00Kyle family IMO John Kyle £135.00Funeral Services N.I.IMO Stewart Kerr £60.00Paul & Judith Wylie £50.00R. Hamilton £20.00

EVENTSD.Northrop(Lap the Lough) £1,280.00Lloyds Banking Group(Lap the Lough - match funding for Darryl Northrop) £500.00A. Higgins (Lap the Lough) £330.00D. J. Smith(ice bucket challenge) £10.00

Limavady support group (Coleraine Boot Sale) £330.00Dun-Droma GAC (Belfastmarathon-late donation) £50.00J&L Black (Belfast CityHalf Marathon) £170.00

EVENTS (continued)Ashley Clarke (Skiathlon) £425.30M T Spieght (Cardiff City Half Marathon) £270.00

COLLECTION BOXESRockys Sports Bar,Odyssey, Belfast £14.42Ryan McCaig £23.39Golden Valley Chinese, Belfast £11.51A special word of congratulations

to Sarah Allen of Broughshane who has smashed the record for a collection box with an amazing

£150.71!

PENNY JARSIrene Haywood £19.69Susan Cooke £22.00Linda and Neil Alberts £14.62Darragh Warnock £7.20Pat McKay £52.50Rosaleen Byrne £18.64Ann Dorrington £4.36T & M Pickering £25.48Marilyn Kerr £23.01

D. O’Kane£11.00

FundraisingMany thanks to everyone who has contributed to our funds in whichever way you have elected to do so. Could we encourage regular givers to consider donating by Standing Order? It’s easy to set up... all you need is a bank account! 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, then for every £1.00 you donate the tax office gives us an additional 25p. HDANI manager Sorcha McGuinness can provide bank mandates for standing orders and gift aid forms if you are interested. Text or Tel: 07982843907 or Email: sorcha@hdani.org.uk

If you already donate by Standing Order please note our new bank account details:Danske BankAccount No: 30047902Sort Code:950679

Please textHDNI 14 £5

to

70070

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It has been a busy few months since I joined the team at HDANI. It has taken some time to get to know the Association and how it has operated and that has been happening alongside undertaking a specialist course in HD at the University of Stirling. It has been a steep learning curve.

Our membership of the Northern Ireland Rare Disease Network saw us involved with Disability Pride - a spectacular event in the grounds of the Belfast City Hall and a great awareness raising opportunity. We also hosted a rare disease research evening at the Belfast City Hospital on 25th September where a number of consultants gave the audience an insight on what it is like to work with HD and other rare conditions. The event was well attended by practitioners, students and family members from across the island of Ireland. The key note speaker was Charles Sabine a former award winning journalist who now dedicates his life to educating people about HD - more about Charles later!

I had the challenge of running the Associations AGM on 26th September and thanking our retiring board members Christine, Grace and Marilyn. We also gained a new addition to the board in the shape of a very enthusiastic Ashley Clarke who has already firmly implanted HDANI in the fundraising activities at the University of Coleraine.

The annual conference at La Mon gave me the opportunity of meeting dozens of our members and I enjoyed hearing their stories and ideas for the Association. Many thanks in particular to those who took the time to fill out the questionnaire which has helped shaped my plans for the future of the Association. Some of our ideas have been put into action and many more will feature in our new strategic plan which will be

in place for the end ofMarch 2015.

Manager’s Report

We have a new Facebook page with over 600 people and a Twitter account which is very handy for tagging politicians! We have also got new ways for people to donate money through texting and online shopping. A new pilot support group project was started in Belfast which involves splitting the 2 hour meeting into two parts - firstly an hour of tea and catch up and then an hour facilitated by a qualified counsellor who leads discussions on issues affecting the group. It is early days and is certainly not a model that suits everyone but feedback to date has been very positive. If the evaluation goes well this is something we would hope to roll out across our support groups to help put a big S in support.

We have also been busy starting a campaign for more HD nursing support. I know many of you have been worried about the absence of a HD nurse specialist and for too long one person has been left to deal with over 100 patients and their families across Northern Ireland. So we have brought this to the attention of the Health Committee at Stormont and will be working with politicians to try and get the Trusts to employ more specialist nurses. Watch this space!

I wish you all a healthy, happy and peaceful 2015 and ensure you that we at HDANI HQ will be busy working on behalf of the HD family.

SorchaMcGuinness

Shock Announcement of the Planned Closureof Stewart Memorial

Nursing Home in BangorThis shocking and unwelcome announcement came in the last week of November. Stewart Memorial has long been a highly recommended nursing home with a track record of quality care for Huntington’s patients. A committee of service users and other interested parties was quickly set up to contest this decision and they met with the Chief Executive on Monday December 1st to demand an explanation. No satisfactory answers were forthcoming and the committee resolved to take the fight to the highest level. The staff and service users felt deceived by what they felt to be the underhand tactics of the trustees in reaching their decision. Over a period of time, rooms had supposedly been emptied for refurbishment (which did not happen) but in fact it was a planned running down of the facilities and a decision had also apparently been taken to accept no more admissions. The committee decided not to facilitate the planned closure and running down of facilities any further by resolving not to panic and move loved ones to other nursing homes in anticipation of failure. Anyone wishing to join the fight to keep Stewart Memorial open can contact Nursing ManagerLorraine Douglas atlorraine.douglas@niid.co.ukto offer ideas and support.

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Our new manager Sorcha McGuinness opened the AGM and welcomed the strong attendance. She gave a presentation outlining her plans for the development of the Association and sought members views through a questionnaire which was circulated. Sorcha focused on plans to campaign for more HD nurses, maximising the support groups, reaching out to new members and raising awareness through social media and a new interactive website. She concluded that with the support of members there was no limit to the Associations potential.

Our outgoing Chair Christine Collins reported on what was described as the most difficult year in HDANI’s history and the almost collapse of the Association largely because of lack of board membership. She explained the Association members had pulled together and persevered with the result so that now, with funding from SDC trailers and a new manager in post, HDANI was looking stronger than ever before. She supported Sorcha’s proposals and said that HDANI was entering an exciting new era.

Tony Clarke, was introduced as HDANI’s new accountant and presented the end of year accounts which were accepted by members. He then indicated that we were on track to likely break even for the end of the 2014/2015 financial year.

Errol’s report covered much the same ground as Christine’s although his perception of the reasons for last year’s difficulties was a little different and he emphasised the strong need for a return to the main ethos of the association which is to place the interests of families firmly at the heart of all that we do.

Sorcha thanked Christine, Marilyn and Grace for their contribution to HDANI as they stepped down from the board. It was agreed that Marilyn in particular who had given such a huge portion of her life to HDANI would be sorely missed. The remaining members ofthe board; BrendanMajor,

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FAMILY CONFERENCE AND AGM 2014Jennifer Warnock, Eleanor Kelly, Sarah Louise Leonard, Roisin McKeating, Paula McElhinney, Majella McConville and Gavin McDonnell were accepted by the members. Nominations were sought for additional board members and Ashley Clarke put herself forward and was accepted and welcomed by members.

Jennifer Warnock, our incoming Chair, introduced herself and expressed her delight at taking up the role, thanked the retiring board members and formally closed the AGM.

successfully illustrate many of the points he wanted to make and his obvious commitment to the HD cause re-inforced his message of how the battle with HD is changing and progressing positively around the world. Charles felt very much at home with everyone and was very happy to answer questions and share conversation and social time with his new N. Ireland ‘family’.

There was a terrific response from members after Charles Sabine’s talk in the afternoon and most delegates reported that they felt uplifted by his presence and his message. The fact that Charles himself is HD positive made an instant connection. There is nothing like shared experience to engender trust and open-ness and members reported that they were much more pre-disposed to listen to what he had to say because of that. He used his vast experience as an international journalist to

On the whole members commented that this year’s conference felt comfortable and relaxed and that they enjoyed the opportunity to socialize more with those from other parts of the province, some of whom were unable to stay for dinner in the evening. Dinner was excellent as usual and the night was rounded off in great style with the excellent music of The Mill Boys!

Next year the conference venue will return to the more airy and spacious Riverside Suite at La Mon

which has been unavailablefor the past two

years.

HDANI Youth at the World CongressDaniel McElhinney from Limavady represented HDANI youth at the World Congress in Barcelona earlier this year and this is his excellent report. Well done Daniel!

I was honoured when Cat asked me to represent N. Ireland in Barcelona at the Young Adults Working Group (YAWG) meetings and the World Congress. I travelled on my own for the first time to Barcelona, I was quite nervous, when I arrived at the airport I was met by Dave Flood, the Southern Ireland Rep. We spent some time in the lobby of the hotel meeting other Reps from Europe. In the evening we had free time before the work began, so myself and Dave, availed of this time and attended a Barcelona football game in Camp Nou, they won, it was an amazing experience!Now for the hard work.Day 2, was the start of numerous meetings, firstly the YAWG, we joined in group discussions, at this point I gave my presentation on where N. Ireland were at regarding moving forward with HD issues and concerns. I explained in great length about the changes within the HDANI Board, hosting our first ever summer camp, the generous funding from South Derry Coachworks to fund a Managerial Post for 3 years, also about the Befriending service starting up, and lastly about how Errol, Ashley, Pat and my mum gave BBC radio interviews from which short videos were produced and put online, to raise awareness for HD.Day 3 was spent in sub-groups, I attended a workshop about Genetic Testing. I found this very interesting. I learnt that in Poland you get your test results within a week of bloods being taken and there are no follow up clinics, I was horrified to discover this.Day 4, was World Congress, I was amazed to see so many people in the one room. I started the day by attending a lecture with a lot of scientists giving talks and to be honest I didn’t fully understand a lot of what they were talking about. I returned to Congress and had the pleasure of listening to Jeff Carroll and Ed Wilde giving their presentation. I have to admit, I could understand theirs a lot better! I also had the privilege of watching the boys putting a pie in the face of Prof Bernhard Landwehrmeyer the EHDN Chairman!Day 5 Congress was winding down, myself and Dave took time out to read information that was provided on notice boards... a lot of this was quite scientific too. Afterwards a group of Reps attended a meeting about a girl who made a documentary following her path of going though the testing process... it was very interesting, thankfully she tested negative!Day 6 I travelled back home, totally exhausted but delighted to have had the opportunity torepresent my Country in such a meaningful way.

Youth Adult Working Group – Country Updates are available on our website http://hdani.org.uk/?page_id=5576

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Rare Disease Plan Consultation

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On the very cold and foggy morning of November 26th a crack team of HDANI representatives gathered in the Stormont Hotel in an effort to raise awareness of HD and seek support for our campaign for more nurses. The event was organised in conjunction with Barry Turley Public Affairs and involved members of the Executive Health Committee and representative from the Minister for Health’s office meeting with us over breakfast. Dr Fiona Stewart, clinical geneticist gave

an overview of HD focusing on the causes and symptoms. This was followed by Sorcha who provided the latest statistics for NI and highlighted the need for a co-ordinated care approach to supporting families and effectively managing the disease. HDANI members Paula, Martina, Bronagh and Jennifer then shared their experiences of living with HD and the desperate need for specialist nurses. The politicians were very taken by the stories and have pledged to help us fight

for more nurses. We will be meeting with the Minister for Health in the coming weeks and following up with the Health & Social Care Trusts.

The numbers gameEstimated no ofHD positive in NI 273Individual cases currently requiring care in NI 116Existing HD specialist nurseposts to cover NI 2No of HD nurses providingcare at present 0

The Campaign Trail

a holistic approach to caring for people with a rare disease and to maximising the available resources for research, innovation and collaboration across the UK to benefit the entire rare disease community.

This is a unique opportunity for those affected by HD and other rare diseases to have a say in theservices they receive, not only in terms of health but right across the board. It is also a chance topromote awareness, challenge discrimination and encourage developments in research and innovation that might lead to advancements in the treatment of HD.

Members were asked to help HDANI in submitting its response and we will be in touch about events and other opportunities to have your say in the coming weeks. It is expected that a final plan will be published by the Minister in Spring 2015.

The draft Plan identifies a range of actions to be taken forward in Northern Ireland during the period 2014-2020 in respect of the 51 Commitments in the UK Rare Diseases Strategy. These Commitments are set out under the five key themes in the UK Strategy which together provide

On the 26th October 2014 Health Minister Jim Wells launched a consultation on the Draft Northern Ireland Rare Diseases Implementation Plan. This sets out how the Northern Ireland Executive plan on fulfilling the commitments agreed by all four Health Ministers in the UK.

Simon ClarkSimon is a long standing and much-loved member of the Limavady support group (despite the personal tragedy of his being an Arsenal football supporter lol!). He’s gene positive and mildly symptomatic which, of course, impacts on his daily living in various ways. Like others he has his good days and his bad days… or even good periods and bad periods when they run into consecutive days. Simon loves activity and stimulation from all sorts of sources so it’s particularly difficult for him when he is sometimes laid up for periods with mobility problems because it affects his mood almost as much as his ability to get around. But Simon is never down for too long… he’s like a rubber ball… always bouncing back! He enjoys every moment that he can when he’s feeling well and is a model for getting the most out of physical pursuits and hobbies.

He enjoys a wide range of activities including fishing, camping, archery, walking and is a big fan of sporting and events like the Belfast Giants (ice hockey), North West 200 (motor cycling), he also enjoys cultural and historical events like the Derry Maritime Festival, Portrush Air Show and has a love of most things that run on four or more wheels!... oh yeah and his dogs! He’s also a keen facebooker.

He’s big on family and enjoys the support of his dad and his children and step-children. He always refers to HDANI as

his family too… so thatmeans just about

anyone who’sreading this!!

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Pie in the Facefor HD

Hot on the heels of the Ice Bucket Challenge is the international HD equivalent the Pie in the Face Challenge. Some of our team have already been busy with the spray cream. Get involved by posting on our Facebook page and nominating friends - it’s a great way to raise awareness and funds! You can text HDNI14 £3 to 70070

Limavady Befriending Project

It’s a simple fact that many of our members feel isolated and lonely at times, especially if they live on their own… and time can weigh heavy on hands and minds deprived of regular stimulation.

It’s well known that staying active, getting out and about and sharing social time with friends and family promotes good mental health as well as physical health… and something to look forward to on a regular basis will always help keep spirits up when you’re feeling low.

Paula McElhinney and her sister Tina Stephens were determined to offer their brother Liam and other group members just such an opportunity and so they started a local ‘befriending’ project which is supported by fundraising events. Every month they lay plans for a social day out… a trip to a neighbouring town or city, a local event, sharing a meal together, and the occasional

special and exciting event such as their trip on a rib boat to Gigha Island in late summer!

This particular event was all the more enjoyable and meaningful because Liam Turner, Simon Clark, Paula & Daniel McElhinney and Tina Stephens from the Limavady group were joined by Ashley Clarke (Omagh support group) and her dad Dessie (Armagh support group) as well as Simon’s dad Michael who was over on a visit from his home in the Isle of Wight. Congratulations to Limavady group for their enterprise and hopefully the other support groups will be able to follow suit and either organize their own local befriending project or join with Limavady when the opportunity presents itself.

Please contact Errol(028) 2177 1812 oronline athttp://hdani.org.uk/?page_id=5168 toadd your details to our Volunteer Register.

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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.

HD mice provide a useful failurehttp://en.hdbuzz.net/169A HD mouse study provides solid evidence of an approach that doesn’t help HD

A starring role for astrocytes in Huntington’s disease?http://en.hdbuzz.net/170We know those famous cells called neurons are important in Huntington’s disease. But the brain has other cell types with ‘supporting actor’ roles. New research has shown that brain cells called astrocytes may misbehave in HD, allowing the neurons to malfunction.

2CARE study of coenzyme Q for Huntington’s disease ends in disappointmenthttp://en.hdbuzz.net/171The largest ever therapeutic trial for Huntington’s disease was halted early this week because an analysis of the results to date showed that it was very unlikely to show positive results. The study, called 2CARE, was designed to test whether a treatment called coenzyme Q10 could slow the progression of HD.

New results bring BDNF therapies into focushttp://en.hdbuzz.net/172Cells in the brain depend on support from one another to stay alive. Nutrients called trophic factors act like brain fertilizer, keeping neighboring brain cells healthy. This process has long been thought to go wrong in HD, and exciting new mouse research paints a very clear picture of exactly what’s happening.

Going toe-to-toe with tau: new insights into the chemical basis of Huntington’s diseasehttp://en.hdbuzz.net/173We know that the cause of Huntington’s disease is a genetic change, resulting in a harmful protein: mutant

HDBUZZ SHORTShuntingtin. But other proteins can get dragged into the fray and contribute to the problems faced by HD-affected cells. New research suggests that a rather notorious protein, called ‘tau’ – a known troublemaker in other degenerative brain diseases – builds up and causes damage in HD.

EuroBuzz 2014: day onehttp://en.hdbuzz.net/174EuroBuzz 2014: day twohttp://en.hdbuzz.net/175EuroBuzz 2014: day threehttp://en.hdbuzz.net/176All the news online from the first three days of the HD World Congress

HDBuzzCast: Announcing HDBuzzCast... Coming soon! http://en.hdbuzz.net/podcast/1Introducing HDBuzzCast - the official podcast of HDBuzz. Huntington’s disease research news in plain language. The first full episode will be released in a couple of weeks! Subscribe at http://hdbuzz.net/podcastHDBuzzCast brings you the hottest news about Huntington’s disease research from around the world. Presented by Dr Ed Wild in the UK and Dr Jeff Carroll in the USA, each episode focuses on a research paper, press release, interview or highlights from a scientific conference. No specialist knowledge is required - we explain everything from scratch, and then help you understand what the science really means for families impacted by Huntington’s disease. HDBuzz is a registered non-profit charity (UK Charity Commission No. 1142040).

Melatonin alterations in Huntington’s disease help explain trouble with sleephttp://en.hdbuzz.net/177Many people with Huntington’s disease have problems sleeping. Sleep-wake cycles are controlled in part by melatonin, a hormone that makes you drowsy at bedtime. Scientists in London measured melatonin levels in HD patients, gene carriers, and unaffected individualsand found changesin the levels andtiming of melatoninrelease. Thiscould help toexplain thesleep disruptionsthat occur in HD.

Video reviews of scientific developments at the European HD Network meeting in Barcelona presented by Dr Ed Wild and Dr Jeff CarrollEuroBuzz 2014 Video, day onehttp://en.hdbuzz.net/178EuroBuzz 2014 Video, day twohttp://en.hdbuzz.net/179Ed and Jeff present the second day’s science at the EHDN meeting in Barcelona. Features a clinical trials roundup, an exclusive interview with Prof Sarah Tabrizi about the first trial of a huntingtin lowering ‘gene silencing’ drug, and a surprise for EHDN president Prof Bernhard Landwehrmeyer.

HDBuzzCast: Huntington’s disease clinical trials news, including the first ‘huntingtin lowering’ trial http://en.hdbuzz.net/podcast/2

Should we worry about a huntingtin invasion?http://en.hdbuzz.net/180Cool lab experiments show the huntington’s disease protein jumping between cells. Does this matter for HD patients? New work in brain diseases like Alzheimer’s suggests that brain cells called neurons might be ‘catching’ the sickness from their neighbors. A recently published paper suggests that, in very specific lab conditions, this might also happen in Huntington’s disease. What does this mean for what we know about HD, and how to treat it?

Largest creatine clinical trial for Huntington’s disease halted after ‘futility’ analysishttp://en.hdbuzz.net/181CREST-E, a trial of the supplement creatine, has been stopped after an early analysis found it couldn’t show benefit. Don’t forget though!! Every failed trial narrows down the focus to finding the right drug!

Huntington’s disease clinical trial announcement: huntingtin-lowering drug to enter Phase I trial in 2015http://en.hdbuzz.net/182A new clinical trial just announced for 2015 aims to test a “huntingtin lowering” therapy, called an antisense oligonucleotide (ASO), that attacks mutant huntingtin directly. We’re extremely excited — it’s the first-ever human HD trial to fight HD at the root of the problem, and has shown great promise in animal models. The first step is to make sure it is safe.

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SNIPPETSVolunteer Register:

If you would like to volunteer for future fundraising, awareness-raising, befriending, summer camp assistant etc please contactErrol Tel: 028 21771812 orerrol@hdani.org.uk who will add your contact details to the volunteer register.You can also use the contact form on our website www.hdani.org.ukDon’t be shy about asking your friends, family and work colleagues to register too! Many thanks!

Support HDANI while youshop online!

Shopping online is becoming increasingly the norm… it’s not for everybody, but for those of us who spend small fortunes on Amazon & iTunes (not to mention a wide range of other top stores) this is a rare opportunity to get ‘something for nothing’ to support HDANI.Below is a link to the “Give to Live” video which explains how it works… check it out… its simple and it costs you nothing but a good feeling for supporting your favourite charity!!player.vimeo.com/video/90757097?title=0&byline=0&portrait=0&color=44b4e4

Fire risk fromsmoking cigarettes?

If your loved one is a confirmed smoker and his/her movements cause cigarettes to fall onto his/her lap and burn holes in clothes, cushions, sheets blankets etc. an online company called www.puresafety.co.uk supplies a one metre square Economy Fire Blanket (a little over 3 feet x 3 feet) which you can drape over your loved one’s lap to protect those garments and furniture coverings!They come in a plastic cover with straps and are actually designed to hang in kitchens as a safety measure… but simply take the blanket out of the cover, cut to size if required and place it in the desired position.These blankets are used for this very purpose in nursing homes.At the time of writing the blanket costs a total of £15.48 including VAT anddelivery.

To speak to the company call them on Freephone: 0800 4082222 Monday - Friday, 9am - 5pm.

Ballot prize winners:Conference 2014

Star prize: Donegal Holiday Cottage (Dympna Farry)A suite of pearls (Gavin McDonnell)“Guess” watch (Moira McNulty)“Guess watch” (Gavin McDonnell)Solid silver ladies dress ring (Moira McNulty)N.B. Gavin McDonnell has generously re-donated his prizes for the next ballot.

Mindfulness Therapy Update:I received the following reply in response to my query to the Health and Social care Board about the availability of Mindfulness Therapy (see Spring Newsletter- cut and paste link below into your web browser) http://issuu.com/hdani/docs/hdani_newsletter_summer_2014_final_aef83ea2c737e6/0“The HSCB has advised that through the implementation of the DHSSPS Psychological Therapies Strategy, it has provided Health and Social Care Trusts with additional funding to enable mental health services to secure further training in NICE approved talking therapies, which include training in Cognitive Behavioural Therapy (CBT) and Mindfulness. Access to mental health therapies, including CBT and Mindfulness, is usually via a patient’s General Practitioner (GP) who may refer them to mental health services where, following assessment, they can co-ordinate appropriate care interventions.”

ENROLL-HD:Check out the ENROLL-HD Autumn Newsletter on our website... http://hdani.org.uk/?page_id=5299 (bottom of the page)... some great articles.. including Ed Wild “putting his back into it!” by donating cerebrospinal fluid to help test a new assay that can measure mutant huntingtin protein! HUNTINGTON’S

DISEASE ASSOCIATIONNORTHERN IRELANDFamilies at the heart of all that we do

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 !

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

Belfast Support GroupTime: 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 GroupTime: 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 GroupTime: 8pm

The Classic Restaurant, Main St. LimavadyEvery 4-6 weeks (ring for confirmation)

Contacts: Paula (028 7776 7664) or Errol (028 2177 1812)

Omagh Support GroupTime: 8pm

The Wave Centre18 Holmview Ave, Campsie, Omagh

Second Monday in the month (except Jan/Feb and July/Aug)Contacts: Moira (028 8164 8717) or Errol (028 2177 1812)

REGIONAL SUPPORT GROUP INFORMATION