HUNTINGTON’S DISEASE ASSOCIATION NORTHERN IRELAND Families at the heart of all that we do
Huntington’s Disease Association Northern Ireland Newsletter Newsletter printing is generously sponsored by NIE Staff and Pensioners Charity Fund
Summer 2014
Message from the Chair Elect Hello to all our members, friends and supporters, My name is Jennifer Warnock and I’ll be taking over as Chair of HDANI in September. I’m a family member and my husband Phillip is symptomatic. I have three adult children and I joined the Belfast Support Group in September 2012 to find support for my family. Two of my children have also joined the Association and attended the recent summer camp in Enniskillen for HD youth (funded by the Big Lottery) where they benefited greatly from the shared experience of their peers and the knowledge and experience of the camp facilitators from Huntington’s Disease Youth Organisation (HDYO).
predecessors by making a positive contribution to the progress of the Association. There has been a lot of very positive progress already in 2014 as we look forward to the guidance of a new board and a new manager and, despite the impact of the recession, the future of HDANI is looking brighter than ever before. I’d like to thank Christine Collins for all her help and support in preparing me for this new challenge and I look forward to meeting you all at Conference on September 26th.
Jennifer Warnock (Chair)
My family and I still have a lot to learn about the HD journey and I’m grateful to HDANI for their love and support and the opportunity to serve as Chair. I hope that my term as Chair will be rewarding both for myself and for the Association and, while I have a lot to learn, I hope to be able to represent HDANI in the manner of my
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
1
Donactions & Fundraising - April 1st - July 31st 2014 Many thanks and congratulations to The Abbey Centre branch of Marks & Spencer whose annual sponsorship total came in at a fantastic £25,365.00!! Many thanks to everyone who has contributed to our funds in whatever way you have elected to do so. Could we encourage regular givers to consider donating by Direct Debit?
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. Errol can provide bank mandates for standing orders and gift aid forms if anyone is interested
It’s easy to set up... all you need is a bank account!
Tel: 028 2177 1812 or Email: errol@hdani.org.uk
Donations B. Alcorn - £16 C. Houston - £50
N.I. Bikers & Trikers annual cycle run - £140
IMO the late E. Kane - £20
Islandderry Trout Anglers £705
Odd Balls Golfing Society £500
Mr & Mrs McKinney - £85 M. Harkin IMO Joe Harkin £975
Mrs A Boyd (membership donation) - £20
-
BBC Radio Appeal - £20
Mid Ulster Vintage Vehicle Club - £2,050
BBC Radio Appeal - Hazel Dusoir - £200
IMO the late Stewart Kerr £1,160
M. Dunphy & M. Owens Charity Concert Omagh - £620
Zela Aviation (Cyprus) IMO Teresa Rosbotham - £80.01
IMO the late Cathy Black £858.33
Mrs L. Bell & P. Kirkwood IMO Teresa Rosbotham - £30
SWL Magee - £100
Multiple donations via Virgin Money Giving ... (including Darryl Northrop) £639.39
PJ Deazley IMO Joe Harkin £25
-
Mrs P. Hughes IMO Teresa Rosbotham - £20 Mrs D. O’Kane IMO Teresa Rosbotham - £10 Mr & Mrs Troath IMO Teresa Rosbotham - £10 Exel Retired Staff Association IMO Teresa Rosbotham - £25 Marks & Spencer (Abbey Centre) - £20,350.80 Marks & Spencer PLC (match funding) - £1,750
2
SDC Trailers - £1,000 Anon. - £64 Anon. - £10
EVENTS Belfast Marathon: Catherine Walsh & Una Burns - £693 Belfast marathon: “The Gilgamesh 5” - £230 Willie Turner Charity Night IMO Philomena Turner - £1,267.50 Belfast street collection £615.45
Collection Boxes Eurospar (J.Warnock) - £22.30 Rockies Sports Bar (J. Warnock) - £34.55 Armagh Support Group (Boxes plus fundraisers) - £111.85 Armagh support group – £39.62 D. Farry, Omagh - £100
Penny Jars I.Smith – £9.80 P.McKay - £33.75
A HUGE THANK YOU!!!!!! To all the following volunteers who raised over £600 at the Huntington’s Disease Awareness Week street collection in Belfast on June 12th! Susan Mallon who co-ordinated the event, Orla Mallon, Amy Sproule, Julie McAuley, Emily Gallagher, Sam Gibson, Anthony McQuillan, Gerry Mochan, Tom Osborne, Brenda McMeekin, Jennifer and Bronagh Warnock, Danielle Brunty and ‘Trackars Biz’ (head office).
3
HDANI Chair meets the Lord Mayor of Belfast The new Lord Mayor of Belfast, Councillor Nicola Mallon (SDLP), paid a visit to the Neurology Unit at Musgrave Park Hospital on Tuesday July 8th to meet with representatives of a number of neurological user groups and charities. As well as being involved in many local enterprise groups, she works closely with community, health and sports organisations with specific focus on connecting with young people and supporting older people. The Lord Mayor has a keen personal interest in the Unit and has made it one of her priorities in her year of office to raise awareness of neurological conditions and the problems faced by carers and all of those living with neurological disabilities.
Good News on the ENROL-HDL Study! Dr. Seamus Kearney, the consultant at the Belfast City hospital HD clinic, has expressed his interest in participating in this important HD research study. The study welcomes participation from anyone from an HD family (not just individuals who have been tested or diagnosed as gene positive). Participants are required to attend for annual visits and the level of support on offer from EHDN is proportionate to the number of participants... in the words of Dr Sara Minster who is co-ordinating the setting up of the study here in N. Ireland “The good news for sites and potential sites, is that the remuneration per participant is sufficient to employ a part time or full time research nurse, depending on the number of participants that are expected to be recruited at the site. The idea is that a site with 50 participants will be able to
4
employ a research nurse at 0.6 FTEs to support the study. Sites with larger numbers will be able to increase their income from the study to cover full-time or more than one staff member. The idea behind this level of funding is that many services, such as that in Northern Ireland, don’t have funding available to provide a dedicated nurse/staff member for the study, and if this issue wasn’t addressed, it would preclude their participation in the study.” This study (a more in-depth rollout of the study previously known as REGISTRY) is something that we have been trying to establish in N. Ireland for a few years now and it will be of huge benefit for those researchers worldwide who are working so hard to find effective treatments for HD.
WOW!!!!.... Who is a special young lady??!! If you look at the stunning young lady leaning into her favourite pop star Harry Styles from One Direction you’ll see a very happy Rachel Thomas from Derry! This fantastic opportunity was made possible by the Rays of Sunshine Charity and I can guarantee you this is one day in Rachel’s life that she’ll never forget! Rays of Sunshine flew Rachel, her mum Melanie and her nanny Karen to London for VIP seats at a One Direction concert at the Royal Albert Hall and the chance to meet the band personally back stage. By all accounts Harry and the band are true stars and were happy to take time to meet and speak with Rachel!
BBC Radio Appeal for Huntington’s: Last year HDANI applied for an opportunity to broadcast an appeal for support for Huntington’s on BBC Radio Ulster. Our application was accepted and the appeal was broadcast on June 29th and 30th. It was quite an experience... a brilliant opportunity to raise awareness of HD and make an appeal for funds to support our work. The appeal is ‘live’ for 12 months and donations can be made online during this period... or by post by sending a cheque or postal order to: The Appeals Office, Broadcasting House, BBC Northern Ireland, Ormeau Avenue, Belfast BT2 8HQ. To listen to the broadcast just copy the address below into your browser: http://www.bbc.co.uk/aboutthebbc/northernireland/appeals/broadcast/huntingtons. html Please share this link with your friends on Facebook or other social media!! The broadcast itself is just over four minutes long and features segments by Pat McKay (ex HDANI Chair) Paula McElhinney, (HDANI board member who runs the Limavady Support Group) and Errol (member Services and Development Officer). As well as the radio broadcast itself there are four video segments featuring Errol, Pat, Paula and Ashley Clarke from Enniskillen.
5
Summer Camp 2014 Facilitated by Cat Martin and Matty Ellison from HDYO with some additional help from Dave Flood (HDAI) and some of our own volunteers, nearly thirty young people from HD families enjoyed the benefits of the first ever HDANI summer camp in N. Ireland which took place on the weekend of July 11th- 14th this year! Generously funded by the Big Lottery’s ‘Awards for All’ scheme, it was held at the Share Village in Lisnaskea just outside Enniskillen. Hopefully the first of many wonderful successes, it was a credit to everyone involved! There were nine new young HDANI members aged from 13-25 which is extremely
6
encouraging!.... and a few self-funded participants from HDAI helped to give it a proper cross border feel and flavour! As always, the fun activities served well as an ice-breaking, team building and bonding platform for some of the more serious business at hand which was, of course, the workshops aimed at addressing the all-important HD issues affecting all of our young people. One and all declared the immense benefit they felt from the work they carried out together... not to mention the fun and social benefits of sharing with their own peer group!
In Memoriam: Teresa Rosbotham “It’s with great sadness and regret that we report the passing of Teresa Patricia Rosbotham from Glengormley, who passed away suddenly and unexpectedly on May 10th 2014 aged 72. For over 10 years Teresa was fortunate to have been lovingly cared for at home by her devoted daughter Sharon. Sharon and her family are devastated by their loss. Fondly remembered by all who knew her”
PROFESSOR NORMAN NEVIN OBE One of the founding members and a very good friend of HDANI, Professor Norman Nevin, passed away on 28th June 2014 aged 79. Although he specialised in the Department of Medical Genetics at Queens University into the use of folic acid in reducing the risks of Spina Bifida and the identification of the gene that causes Cystic Fibrosis, he had a good knowledge of HD and was very interested in the research and discovery of the gene which causes Huntington’s Disease. Professor Nevin with Wendy Johnston held the first meeting of what was to become Huntington’s Disease Association Northern Ireland in 1974 in Lisburn. He took a keen interest in the work of the association in its early years and would be generous of his time and knowledge. Professor Nevin was an international leader in the field of genetics. His vital research earned him an OBE and when he retired in 2001 he was appointed Professor Emeritus in Medical Genetics at Queen’s. May he rest in peace.
Cathy Black (26th Feb 1975 – 5th April 2014) The circumstances leading up to the passing of Cathy Black from Donaghadee were particularly traumatic and heart breaking. Cathy’s husband Alan, son Dylan, siblings Michael, Tina and Steven and her many friends are devastated by her loss.
“Cathy never thought of herself and always put others first. An angel, gone to live with the angels” (Alan Black)
7
HD Buzz Shorts The following excerpts from HDbuzz bring you links to the latest HD research online.
The brain in Huntington’s disease: greater than the sum of its parts?
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.
http://en.hdbuzz.net/166
Raptor announces results of cysteamine trial for Huntington’s disease http://en.hdbuzz.net/163 A chemical called cysteamine has long been of interest as a potential therapy for Huntington’s disease. Now, Raptor Pharmaceuticals has announced the interim results of a study of cysteamine in HD patients. The trial failed to meet its pre-specified goal, but there are some interesting details in the data suggesting the ongoing trial deserves attention.
Could HD be caused by amino acid deficiency? http://en.hdbuzz.net/164 This article is related to the ‘cysteamine’ article above
NUB1: enhancing clearance to decrease mutant huntingtin http://en.hdbuzz.net/165 Huntington’s disease is caused by the accumulation of the toxic mutant huntingtin (mHTT) protein. This means that decreasing levels of mHTT, by boosting its breakdown, could be therapeutically beneficial. Palacino and colleagues have identified a possible contender for this role: negative regulator of ubiquitin-like protein 1, better known as NUB1.
8
The symptoms of HD are caused by damage to the brain, but not all parts of the brain are affected equally. This raises an important question - if we had a treatment that could help only a small part of the brain, which part would we pick? A new mouse study from William Yang, at UCLA, attempts to answer this question.
Jumping genes: Huntington’s disease protein invades brain transplants http://en.hdbuzz.net/167 Huntington’s disease is caused by the malfunctioning and early death of brain cells. Replacing those dead and dying cells with stem cells has long been a goal of some HD scientists. A new study investigates the long-term health of some of the earliest cell transplants into HD patient brains — and finds a surprising result.
Illuminating the progression of Huntington’s disease http://en.hdbuzz.net/168 Huntington’s disease (HD) progression is a long process in which the first changes in the brain happen well before we even see symptoms in patients. It makes sense to focus our efforts on treating the earliest changes, to nip the problem in the bud. But what are these changes and how can we target them? A recent study has literally shed some light on this question. By creating HD mice with glowing brain cells, researchers at the University of Nottingham Medical School and the Babraham Institute in the UK have found that some of the earliest changes happen before these cells start to die, in a region of the brain where HD researchers have never before thought to look.
Snippets HD Star HDANI launched four messages into space in Scottish Huntington’s Association HD Star (July 17th from Lagganlia) The messages read as follows: “In loving remembrance of all those who have passed away from Huntington’s disease” “Families at the heart of all we do” “Wishing hope and courage to all those living with Huntington’s disease - there IS light at the end of the tunnel” “Love surpasses all understanding.... and hope springs eternal”
Dignity in Care Mostly our loved ones are well cared for in nursing homes and day centres... but sadly, there are always occasional exceptions and it’s not uncommon to be confronted with an attitude such as... “ You’re only a family member..... what do you know?”
Thankfully, good ‘health professionals’ recognise the value of input from family who have long term experience of the needs of their loved ones and good staff are keen to make use of that intimate knowledge to ensure that the dignity of our loved ones is always respected.
But... if you have the misfortune to encounter this unfortunate attitude here’s a little quote from the Health Minister that you may be able to use to back your argument.
In March 2012, the Minister launched a report entitled “In Defence of Dignity” saying: “This report into the human rights of older people living in nursing homes focuses on simple aspects of everyday living. These are things which able-bodied younger people take for granted – like eating and drinking, dealing with continence needs, or communicating with other people. When we lose our ability to carry out these simple functions and rely on others, we lose our independence. This does not mean we should lose our dignity. Those entrusted with caring for older people must never stray from keeping dignity, respect and fairness at the heart of everything they do.”
9
A beautiful poem for her mother by Katelyn Gribben (age 13) “On a rainy day
She’s so beautiful
My mum is the sun that shines
You just have to stare
She’s the best Mom ever
With big brown eyes
And I’m proud to call her mine
And dark black hair
She is way better
My mum likes lots of stuff
Than any pop star I know
Even though that’s not Cafe Nero
And when you are around her
I still love her with all of my heart
She has this warm glow
She is my absolute hero”
Disability equipment
If anyone needs any of the following disability equipment and is having difficulty accessing it from your local Trust we have a few second-hand items which are in good condition: Disability leisure chair (Kirton) High backed shower chair (which can double as a commode when necessary) Fold up wheelchair Rigid wheelchair for use in a mobility vehicle. Contact Errol for details 028 2177 1812
Emergency Services (a useful tip!) The Emergency Number worldwide for all Mobile Phones is 112. If you find yourself in an emergency situation outside the coverage area of your mobile network, dial 112 and your mobile will search any existing network in your area to establish the emergency number for you, and interestingly this number 112 can be dialled even if the keypad is locked. This works on all phones worldwide and is free.
Congratulations To John Eden and his team at Scottish Huntington’s Association on raising over £1 million Big Lottery Funding for two great projects!! Over £700k to support the SHA Youth Service for the next 5 years and over £300k for a “Financial Wellbeing Service” which will support HD families in Scotland who struggle with the financial basics of keeping body and soul together while living with HD.
10
Health through Mindfulness An ancient way of living that is so relevant for the lifestyles of today. A recent report analysing data from 47 clinical trials involving 3,000 participants suggests that mindfulness, a meditation technique aimed at focusing the mind on the present moment, produces measurable improvements of up to 20% in symptoms of anxiety and depression compared to people who practise another activity, and can also help alleviate feelings of stress and enhance quality of life. Mark Williams, professor of clinical psychology at the Oxford Mindfulness Centre, part of Oxford University’s department of psychiatry, calls it a “direct knowing of what is going on inside and outside ourselves, moment by moment”... and that mindfulness can be an antidote to the “tunnel vision” that can develop in our daily lives, especially when we are busy, stressed or tired.” Clinical trials have shown that MBCT (Mindfulness-Based Cognitive Therapy for Depression) is as effective as antidepressants, and in patients with multiple episodes of depression can reduce the recurrence rate by 40-50% compared with usual care. Nice (the UK’s National Institute for Health and Clinical Excellence), approved MBCT for the management of depression in 2004, meaning the therapy is available on the NHS. Susan Cooke recently attended a course in Mindfulness in Belfast and can vouch for the difference that it has made in her life and her attitude towards daily living. Susan and I lost our daughter Rachael to HD two years ago and it has been, at times, an unbearable grief to carry. This is what she has to say about the practice of Mindfulness. “Practicing ‘mindfulness’ helped me greatly with the grieving process when I couldn’t face the future with any joy or expectation. It’s not about forgetting the past or denying the pain, but it helps me not to live in the past and not to dwell on negative emotions. I can now accept difficult emotions when they come but I no longer feel stuck. I would highly recommend this practice of cultivating mindfulness for changing your whole attitude to life and happiness on so many levels. It brings me acceptance and gratitude for my life every day.” Susan Cooke “Aware Defeat Depression” ran some free “mindfulness” courses last February and I’ve been advised that they are currently seeking funding for more courses to be made available. I’m on their mailing list and they promised to keep me posted on any new courses. http://www.mindfulschools.org/about-mindfulness/mindfulness-exercises/?gclid=CKeF 2bGPn74CFaXHtAod-TYAHg
11
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
12
Huntington’s Disease Nurse Specialists Belfast City Hospital Tel: 028 9504 7930