Hello Everyone, Welcome to our last newsletter of 2016. Winter is coming! I hope everyone enjoyed the conference at La Mon, which, once again was an interesting and enjoyable day and night. Thanks to our speakers this year Dr Jennifer Hoblyn from Dublins Bloomfield Hospital, Dr Ed Wild from UCL who spoke about the current research, Lydia Fletcher, Erin Probert and Michael Jenkins from The Royal Hospital for Neuro-disability in London and our youth counsellor Michelle McGrath along with Ashley, Amy and Chloe. I would also like to thank all those who provided workshops, complementary therapies and information stands in the afternoon and I hope these were helpful to all.
To finish I’d like us to remember those we lost during the year, members, friends and family and keep them in our thoughts at this time. Hopefully you will make it to our Christmas lunch but if I don’t see you there then let me wish you a very Merry Christmas and a Happy New Year.
Jennifer
Thanks to La Mon House Hotel once again for keeping us well fed and looking after everyone. Special thanks to Anthony and Eric for the fantastic music that kept us dancing late into the night. I would like to welcome Angie Smyth our new support worker in the South and West. Hopefully everyone has met her now or will do very shortly. We say a sad goodbye to Dolores who has moved on and we wish her well for her future. Jennifer delivering the opening address at conference
CEO REPORT This edition of the newsletter shows just a snapshot of the work that has been going on over the summer from the youth camp, new website, awareness week and conference- it has been an exciting time. We also said goodbye to our fabulous support worker Dolores and hello to Angie who has taken on the role covering the Western and Southern Trusts. You will read all about the youth work in our youth section of the newsletter and we were delighted that Michelle, Ashley, Chloe and Amy presented at conference about the support HDANI and HDYO have been providing. On the website front it has been an enormous and ongoing task to design and populate a site that it is engaging, accessible and informative and would not have been possible without support and generosity of time from Christine Cahoon from Platypus. The site will continue to be added to with new factsheets and resources being developed. Our second annual HD Awareness Week was a fantastic success. We launched with an event at Stormont attended by family members and patients where we unveiled our new website and had an informal afternoon of tea and biccies with over two dozen MLAs, members of the Health Committee, two former health Ministers, the current Health Minister and the First Minister. Everyone got to hear first hand about the impact of HD and need for improved co-ordinated care. We were flat out on social media all week promoting information about HD and then hosted a training seminar for health and social care professionals on Thursday 29th September. Over 80 people attended including neurologists, nurses, palliative care staff, occupational therapists, speech and language therapists, dieticians, care workers, physiotherapists and counsellors. We combined the personal and professional insights with presentations from Jennifer, Errol and Ashley to share their experiences of the impact of HD on family members coupled with in-depth information from Dr Jennifer Hoblyn, Erin Probert, Lydia Fletcher, and Michael Jenkins on various aspects of HD management. Feedback was incredibly positive and we look forward to continuously building our networks and sharing learning within HSC services. As always conference in La Mon Hotel on Friday 30th September was a busy day of learning, sharing and fun with over 120 people in attendance we followed our AGM with a range of interesting and engaging speakers focusing on various aspects of HD. Ed Wild filled us in on the latest developments in drug trials which always serves to instil hope. We had guest exhibitors from Barnardos, Marie Curie, Cruse, Murlands Solicitors, NIHE and Neuro Physio all there to provide advice and information about services relevant to those affected by HD. Victoria from Neuro Physio held drop in physio sessions and provided a workshop on the benefits of physio to HD patients while Eleanor from Cruse bereavement care delivered a positive workshop on memory jars. Ann, Katrina and Andrea were on hand to deliver reflexology and massage sessions to attendees before the conference closed at 6pm. The evening wrapped up with a delicious three course dinner, the annual raffle and dancing to Eric and Anthony from Southbound Train/The Mill Boys. Everyone seemed to have a great day and we even had a couple of surprise visitors. Roll on next year!
Sorcha
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Sorcha explaining about the impact of HD to First Minister Arlene Foster
SUPPORT GROUPS HDANI currently offer four regional support groups which meet monthly throughout the year. Groups are open to patients, carers, partners, family members, those at risk of HD or those with a loved one impacted by the disease. While there is no strict age limit those under the age of eighteen and young adults may be interested in our youth support programme. Each group last for 2 hours and is facilitated by a support worker who keeps members up to date with our work, events and services and also acts as a point of information, practical and emotional support for members. Each support group also incorporates a group counselling element with a trained, accredited counsellor leading an hour long session on a range of topics relevant to patients and carers. The groups are a chance to meet and learn from other people affected by HD and benefit from professional support all in an informal, non judgemental space over a cuppa. Our support groups meet in; Omagh, Wave Trauma Centre, 18 Holmview Ave, Omagh. 8-10pm on the second Monday of the month. Facilitated by Angie with counsellor Bernie. Belfast, 3rd Floor, Grovenor House, Glengall St, Belfast. 2-4pm on the first Thursday of the month. Facilitated by Errol with counsellor Sarah. Armagh, Ard Mhacha House Care Home, Desart Lane, Armagh. 7.30-9.30pm on the third Thursday of the month. Facilitated by Angie with counsellor Sarah. Limavady, The Classic, Main Street, Limavady. 8-10pm on the second Thursday of the month. Facilitated by Errol with counsellor Carol. For more information about any of our groups contact us Please note that some groups decide to take a break over holidays so do get in touch to confirm dates Call: 079 2151 3561 or 079 5409 8051 Email: info@hdani.org.uk
FOND FAREWELL FROM DOLORES I would like to take this opportunity to say farewell to you all. It has been a privilege to have been part of the HDANI team over the past year and I thank Sorcha and Errol for their help, support and friendship during that time. Huntington’s Disease is often referred to as the Family Disease due to the risk factor and the impact on the whole family, so it has been heartening to have witnessed the ‘Family’ that HDANI is, and to have been warmly welcomed into that family. I thank you all for your help and support and wish HDANI continued success in striving to improve the lives of those impacted by Huntington’s Disease. I am taking a little time off but whatever lies ahead for me, I will carry you all in my heart. With Love,
Dolores
HD Service Access The latest information we have received states that any patient with HD in Northern Ireland can seek a referral through their GP to Dr Seamus Kearney, Familial Movement Disorder Clinic (HD Clinic) at Belfast City Hospital and they will be added to the waiting list for an appointment however only those patients in the Belfast or South Eastern Trust will have access to the specialist HD nursing service. This is something we at HDANI will continue to lobby the government for change. 2
ANNUAL GENERAL MEETING Friday 30th September 2016 At La Mon Hotel and Country Club DRAFT MINUTES Attendance: Jennifer Warnock (Chair), Brendan Major (Treasurer), Anthony McQuillan, Ashley Clarke, Paula McElhinney, Martina Stephens, Sorcha McGuinness (CEO), Members and Guests (see attached list) 1.
Opening and Welcome. (Jennifer Warnock, Chair)
Jennifer welcomed everyone to the conference and thanked those who have helped as members of the board, volunteers, and fundraisers throughout the year and gave credit to staff, past and present for their hard work throughout the year. She also asked those present to remember the people we have lost over the past twelve months and keep their families in our thoughts.
2.
CEO’s Report (Sorcha McGuinness)
Sorcha reflected on the years activities and highlighted the services which were being delivered including the role of our two support workers, four regional support groups with counsellors, our counsellor led youth programme, ezine, newsletters, and social media sites. She highlighted the successful events that had taken place as part of Awareness Week 2016 including the launch of our new website and thanked Christine Cahoon for her work on this. The web launch was held in Stormont as a means of raising HD awareness among politicians and was attended by dozens of MLAs as well as previous and current Health Ministers and the First Minister. The involvement of family members was crucial in physically demonstrating the multigenerational impact of the disease. The role of family members was highlighted again in the context of training and Sorcha explained that the previous night over 80 health and social care professionals from across Northern Ireland heard from medical experts as well as family members who had been personally impacted by the disease. Both awareness events along with mail outs to GPs and surgeries and social media campaigns were extremely successful in getting increased knowledge and understanding about the disease. Sorcha thanked all those involved in helping throughout the week.
3.
Appointment of Auditors (Clarke & Co)
Tony Clarke presented the year 1st April 2015- 31st March 2016 annual accounts showing income and expenditure.
4.
Finance Report (Brendan Major, Treasurer)
Brendan Major provided a walk-through of last and the current year’s annual income and expenditure explaining that while last year was a very good year for HDANI there was genuine concern that in the current increasingly difficult funding climate that we would struggle to maintain our existing services. He appealed to the membership to provide details of any business connections they have highlighting that many companies require charity nominations to come from their customers or staff. Essentially having a personal connection to a business is key to allowing HDANI to pitch for funding.
Questions arising from the CEO’s Report and accounts 1. What is the difference between Restricted and Unrestricted Income? a. Restricted income is usually a grant and must be spent only within the specified boundaries for example of a particular project. Unrestricted income is usually donations and can be spent on any area of work. 2. Can any donor restrict what their donation is spent on? Yes they can specify what they wish the money to be spent on and the CEO and or Trustees can agree to do so provided it meets their agreed programme of work and is compatible with the memorandum of association.
5.
Ensuring the needs of members are met (Anthony McQuillan, Board Member) Errol Walsh introduced Anthony and his long connection to HDANI and relatively recent board membership. Anthony then spoke about a body of work he was doing through his position on the board to measure the impact of HDANIs work and ensure that our services met the needs of members. He asked members to reflect on ways in which they could communicate with HDANI staff and board to ensure that their views and needs were represented and invited people to speak to him directly and complete the feedback forms which would be used to inform future events.
6.
Election of Board Members (Sorcha McGuinness, CEO)
Retired members were thanked and the current Board Members were elected to serve for another term and other interested members were asked to speak to Sorcha about joining the board. Proposed by Dorothy O’Kane, Seconded by Simon Clarke.
7.
Conclusion and Close (Sorcha McGuinness, CEO)
Sorcha outlined the plan for the rest of the days events and reminded members that they should feel free to approach any member of the staff or board to discuss our work, volunteering or fundraising opportunities.
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CHRISTMAS 3 COMPANY CHALLENGE Please help us sustain our work by identifying 3 companies or businesses, large or small, that you have a connection to. It could be where you or a family members work or shop or a local business that you have a personal connection to. This information is crucial to helping us identify potential business partners to invest in our work.
Think about; • • • • •
What the business name is? Where the business is located? What the business does? How you are connected to it? Who is the best person to contact?
We will develop a tailored approach to the company and if you are willing involve you in the process.
Get in touch with us through our staff, Facebook or email info@hdani.org.uk
HUNTINGTON’S DISEASE ASSOCIATION NI STATEMENT OF FINANCIAL ACTIVITIES (SOFA) YEAR ENDED 31ST MARCH 2016 Restricted
Unrestricted
Total this year
2015
Incoming Resources from generated funds
35,470
57,795
73,630
73,630
Resources Expended
35,470
57,782
79,869
79,869
0.00
13
(6,239)
(6,239)
Surplus/(Deficit) for the year
2016
2015
General Funds
47,004
46,991
Restricted Funds
0.00
Capital and Reserves
0.00
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HUNTINGTON’S DISEASE & DIET Why do I need to eat well? People with Huntington’s disease can find it difficult to maintain their body weight, or they can be underweight. People who are very underweight are prone to infection, have slower wound healing and progressive muscle wasting and extreme tiredness. People with Huntington’s disease usually need a much higher calorie intake than other people.
I am hungry but find eating difficult You do not have to eat large meals. Small frequent snacks, high in calories (little and often) can be just as helpful. Do not drink large amounts of fluids with meals as these will make you feel full quickly but do try to drink plenty of fluids in between meals. Take your time over meals. Sit comfortably.
Add extra calories MILK is a good source of protein. Try to drink at least one pint of full cream milk a day. You can add calories easily to milk by adding 2oz skimmed milk powder to one pint of full fat milk. YOGHURT or similar desserts can be used on fruit and puddings. Those with added cream or the thick and creamy ones are ideal. Avoid low fat or diet yoghurts. DOUBLE CREAM added to cereals, fruits, puddings, soups and mashed potato etc will increase calories. CHEESE is a good source of both protein and calories. Full fat cheeses such as cheddar and Lancashire are the best. It can be sprinkled on creamed potatoes, soft vegetables, soups, fish in sauce, minced meats and baked beans. Add cheese to omelettes and scrambled eggs. Cheese in a sandwich, on biscuits or on toast is an excellent snack. MEAT AND FISH in any form is useful. Cook well and serve with plenty of gravy or sauce. Tinned fish in oil or mayonnaise rather than brine or tomato sauce has more calories. LENTILS AND BEANS are also a good protein source. They can be added to soups, casseroles, and stews, or used just as a vegetable. Baked beans on toast is a useful snack.
Foods you may find difficult to swallow Raw or hard cooked vegetables, salads, peas, sweetcorn, broad beans, tomato skins; hard fruits such as apples, pears, grapes, pineapples, fruit skins or fruit peel; crusty bread, pre-sliced bread, granary bread, high fibre white bread, bread crusts, toast, crackers and crisp breads; sponge cakes; crisps; hard chips; flaky and puff pastry; hard pastry crusts; nuts and food containing nuts; dried fruit and foods containing dried fruit; shredded wheat.
Put more energy in it!! SUGAR - use lots. Put it in hot and cold drinks, on softened cereals and in desserts. HONEY, JAM, MARMALADE, GOLDEN SYRUP, TREACLE can be spread generously onto bread, biscuits and scones, if you can swallow these. Stir them into milk puddings and softened breakfast cereals. Add honey to Greek yoghurt for an excellent snack. CHOCOLATE - can be melted in the microwave and added to custard, puddings or milky drinks.
Issues that might occur Dry mouth If you find you have a dry mouth you may find the following suggestions helpful: - - - -
small sips of drinks frequently - a small flask with a lid and straw like a cycling flask can be carried around easily. fruit drops may help to get the saliva flowing - some people have commented that acid drops help. sucking ice cubes is useful unless you are likely to swallow or choke on them. You can make these with lemonade or fruit juice as well as plain water. sorbets can be refreshing.
Ask your Doctor about the possibility of prescribing one of the artificial saliva preparations available.
Care of the mouth Read our factsheet about HD and dental care as a range of factors mean that those with HD can suffer decay and gum disease.
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HUNTINGTON’S DISEASE & DIET Sometimes foods may not taste the same or seem to have no taste but good mouth care can help with this. To keep your mouth in a healthy condition: - - - - - -
use mouthwashes regularly. Ask your GP, nurse or dentist about the best one for you to use if your lips are dry, apply a lipsalve eg. Vaseline. clean your teeth frequently. Use dental floss. visit your dentist for regular check-ups. a cube of cheese after each meal will neutralise the acid that causes tooth decay. if you wear dentures, keep them clean and make sure they fit correctly. Ask your dentist for advice. Dentures are one of the first things to become loose when people lose weight.
Keeping food down - - - - -
sit upright to eat your meals. Try not to lie flat immediately after a meal. eat your meals in a well ventilated room and wear comfortable clothing. try to ensure there is a calm, relaxed environment. minimise what is going on around you so you can concentrate on eating for example turn off the TV. discuss with your doctor or a dietician any problems regarding eating you may be having.
Changing your diet to suit your need At times it may be necessary to avoid foods that you know cause you problems. Sometimes you may need to change the consistency of the food i.e. eat softer or puréed food. If you find you are having difficulty swallowing thin liquids, try thickening them slightly, this often helps and prevents coughing. There are many thickening agents on the market and your doctor can prescribe one for you.
How to get the texture right if you need soft or puréed food There are three different ways to try: Using a liquidizer A liquidizer is the quickest and most efficient way giving the best results. The following tips may help you: Try not to liquidize all of the meal together, liquidize the meat and vegetables separately. You can add sauces to give flavour. Meat and Fish Remove all skin, bone and gristle from cooked meat and fish, cut into small pieces add stock or gravy or sauce to get the right consistency. Vegetables Cook them to soften before liquidizing again add stock, gravy or sauce to get the right consistency. Cooking them by steaming will maintain their nutrients. Fruit It is easier to blend fruit that is soft, or thawed if frozen. Tinned fruit in syrup is a good choice. Stewed fruit can also be liquidized. Using a Hand Blender These are cheaper than liquidisers but take longer and some foods may not liquidise. Using a sieve and spoon After cooking some food can be forced through a sieve this may need to be done more than once. Whichever method you use it is important to remember: • • • • • •
meals need to look attractive all utensils should be kept clean meals may need warming during serving if feeding takes time. nutritional supplements which can help to add calories to your diet are available from your doctor. a dietician can advise you on your individual needs. Referral can be arranged by your GP. a referral by your GP to a speech therapist can be helpful in resolving some of your swallowing problems.
your doctor can refer you to an occupational therapist if you are having problems with cooking, eating and drinking and they make give you special aids like bowls, cups and cutlery to help maintain your independence. as symptoms progress you may find eating stressful but remember a calm relaxed environment will help!
Some recipe ideas for soft and puréed diet In each newsletter we include some recipes which are low cost and nutritious. There are some other ideas below for a soft diet.
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HUNTINGTON’S DISEASE & DIET DRINKS FORTIFIED MILK 1 pint of milk (full fat) glucose powder Put the powder into a jug. Add the milk gradually, stirring all the time until all the powder has dissolved. Store in the fridge. HONEY CUP ½ pint fortified milk 2 teaspoons of honey Warm the milk. Put the honey into a cup. Pour the warm milk into the cup, stirring well. MILK SHAKE ½ pint fortified milk 1 scoop ice cream Milk Shake flavouring Stir all the ingredients together in a tall glass YOGHURT FLIP ½ pint fortified milk 1 carton of ordinary fruit yoghurt sugar to taste Whisk all the ingredients together in a tall glass, serve chilled. MINT CHOCOLATE COOLER ½ pint fortified milk 2-4 heaped teaspoons of drinking chocolate peppermint flavouring grated chocolate Mix the drinking chocolate and the peppermint flavouring with a little milk. Add the remainder of the milk, stirring well. Pour into a glass and decorate with grated chocolate. CITRUS SURPRISE ½ pint fortified milk lime cordial orange and lemon slices for decoration Add milk to the lime cordial according to taste. Serve chilled in a tall glass decorated with orange and lemon slices. WHISKY AND HONEY WARMER ¾ cup of fortified milk 2 level teaspoons clear honey 1 tablespoon whisky or brandy Warm the milk, stir in honey, and pour into a cup. HOT MILK MOCHA ½ pint fortified milk 2 tablespoons drinking chocolate 1 level teaspoon instant coffee 1 tablespoon double cream. Boil milk and pour into mugs, add chocolate and coffee, stir well, swirl in fresh cream and serve. There are a wide range of high calorie, high protein drinks in many sweet and savoury flavours available from your GP or contact your Dietician.
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HUNTINGTON’S DISEASE & DIET Meal ideas for those who have difficulty swallowing Breakfast Porridge Instant hot oat cereal Readybrek Weetabix Fruit juice Puréed fruit Plain or flavoured yoghurts Rice Pudding Custard
Main Meals soup casseroles, hotpots fish with sauces pasta dishes cauliflower cheese cheesy potato bake lentil bake
Puddings puréed fruit milk puddings rice puddings, semolina, custard, blancmange jelly, including milk jelly smooth yoghurts and fromage frais ice cream and sorbet instant desserts e.g. Angel Delight, Birds Instant Whip egg custards and crème caramel
Try to have a glass of citrus fruit daily to help with vitamin C intake.
Contacts A Dietician or nutritionist can give you detailed individual advice about your needs. A referral can be made via your GP. Once referred you can also help your nutritionist understand more about HD by directing them to the resources on our website aimed at health care professionals.
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MEMORIALS Andrew (Andy) Law 29.07.1972 – 06.03.2016 Andy was a well educated young man and a keen sportsman, captaining both his school Rugby and Cricket teams. After graduating from College he went on to teach at the Boys Model School in Belfast. He was a popular and caring young man, helping his father care for his mother Mabel until her death from HD in 1990. Andy himself was later diagnosed with HD and eventually had to go into full time care when his father Joe, became ill with cancer was no longer able to care for him. Joe passed away in 2009. Andy’s remaining family visited him often in Larne Care Home where he was lovingly cared for until he passed away into the presence of his Lord and Saviour on March 6th 2016. He endured his illness with great grace and dignity and will always be lovingly remembered by family and all who knew him for his cheerful temperament and smiling good nature. Rest in Peace.
Liam Doherty 22nd April 1969 - 1st April 2016 Liam passed away just weeks before his 47th birthday after a long and courageous battle with HD. He will be forever missed by his daughter Angelina who loved him so much and so greatly admired his independent fighting spirit. May he rest in peace.
Please Remember We ask you to keep in your thoughts the friends and family of the late Richard Hanna who passed away on 15th May 2016. Also remember Andy Campbell, beloved husband of Olive who died in October after a short illness. Our condolences to Sylvia Mallon and family on the loss of her son Stewart who passed away in October so soon after the death of his sister Jill.
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VOLUNTEER FOCUS Volunteer Focus: Deidre Dunphy, Volunteer Befriender (The following article appeared in the Tyrone Constitution) Having recently retired after over 30 years at Omagh Women’s Aid, local woman, Deirdre Dunphy had requested those who wished to mark her retirement do so by way of a donation to The Huntington’s Disease Association NI (HDANI), and a cheque for £500 was presented by Deirdre to Dolores McBride, HDANI Support Worker for the Southern and Western Trust Areas. Speaking at the presentation, Dolores, remarked, ‘We are grateful to Deirdre for using the occasion of her retirement to remember those affected by Huntington’s. Huntington’s Disease is a genetic neuro-degenerative disease. Symptoms usually start to appear during mid adulthood and progress over 5 - 20 years. Juvenile Huntington’s Disease is much rarer and develops before the age of 20. If your parent has Huntington’s you have a 50% risk of inheritance. As there is currently no cure, HDANI are striving to support families affected by Huntington’s and to raise awareness. We have 4 Support Groups in N Ireland including one in Omagh which is held in The Wave Centre on the 2nd Monday of each month. Deirdre became involved in supporting and volunteering with HDANI a number of years ago. We thank her for her generosity in time and spirit and now also in the form of her retirement gift, and we wish her health and happiness to enjoy this new chapter in her life.’
Deirdre Dunphy with colleagues from Womens Aid presents a cheque to Dolores raised through her retirement function
If you are interested in volunteering with HDANI as a befriender, counsellor, fundraiser or youth volunteer please email info@hdani.org.uk
MY FIRST IMPRESSIONS Angie Smyth new part time support worker for the Western and Southern Trusts
ted on have reflec t worker I or p p su as ew role rence and into my n ding confe As I settle ge of atten le vi ri p e e had th part of th s so far. I le who are p eo p l impression fu onder y of the w meet man getting to munity. HDANI com small t from the h of suppor ac re d an h depth ve been pressed wit of it. I ha I am very im be a part to d ge le vi ry pri mitment, and feel ve e the com team here y appreciat ad re al d ed an ing done. ly welcom nt work be very warm the excelle s ve ri d at th dedication energy and work d, as we lenges ahea al ch e th ard to better h look forw vision and I very muc service pro , n io us cl for in to know advocate ng to get together to to continui d ar rw fo . I look areas, and ding of HD d western an rn understan he ut so sible. rly in the a life as pos , particula as normal e HD families liv to ering them and empow supporting on, See you so Angie
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HDANI YOUTH AT CONFERENCE For the first time HDANI Youth had a stand at our annual conference in La Mon. Our counsellor Michelle McGrath was joined by Amy, Chloe, Roisin and Ashley and spent time explaining to members about the support and activities that had taken place throughout the year. They displayed some photos from events and some of the artwork and crafts the children had made through their group therapy work with Michelle. There was a great response and lots more interest from families about getting their children involved. Michelle and the girls also gave fantastic presentations to the conference delegated. Michelle talked about the support on offer, the importance of safe spaces to share about HD and learn about feelings, different coping mechanisms and methods of engaging with various age groups and some of the resources available. Chloe, Ashley and Amy talked about how important they felt the support they received was, especially after having grown up with very little. The girls had recently represented Northern Ireland at the HDYO European camp along with Roisin and shared stories and pictures. Ultimately all of the presentations highlighted the need for age appropriate support in Northern Ireland and all showed clear commitment and passion about making it a reality for children and young people here.
Our counsellor Michelle speaking at conference
HDANI Youth stand at conference
Amy Chloe and Ashley ready to present at conference
artwork on display at conference
NEW YOUTH COMMITTEE HDANI are inviting applications from volunteers to join our new youth committee. We are looking for young people from 16-30 yrs from anywhere in Northern Ireland who are interested in driving forward support for children and young adults facing the challenges of HD. Youth Committee members will be responsible for fundraising, sourcing venues and activities, consulting with families and children and acting as leaders at youth events. Support will be provided by Sorcha and Michelle. Our vision is to develop a youth programme for young people led by young people! This is an exciting opportunity to benefit from support, develop your leadership skills and really help shape the services you need! For more information and an application contact youth@hdani.org.uk
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SUMMER CAMP 2016 Over 30 children and young adults came together for our youth camp at The Jungle NI in Moneymore from 5-7th July. Over the course of the three days they took part in loads of activities including paintballing, Segway and golf buggy driving, archery, climbing , high ropes courses, rodeo bull, group games, Grufallo trail, Llama trails and lots of group work with our counsellor Michelle. Thanks to everyone who came along and especially to our peer volunteers and to our adult volunteers Michelle, Patrice, Paula, Julieanne and Iza.
Feedig the llamas
Everyone loves bubbles
cupcake decorating
Camp fire fun
Group fun and games
Gruffalo trail complete
Loving the animals
Young kids groups take part in play therapy
No fear here
Off road train fun
Who is taking who for a walk
Segway racing
Team work
Time to have a rest
Wheelbarrow racing
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RESEARCH Huntington’s disease research news. In plain language. Written by
For all the latest HD research news gonews. to www.hdbuzz.net Huntington’s disease research In plain language. Wri scientists. For the global HD community. the DNA, mutant mRNA and protein would
Huntington’s disease research news.For In plain Written scientists. thelanguage. global HD community. genetic instructions has developed a misprint by scientists. For the global HD community. that causes the huntingtin protein to be built
Important advances in next generation genome editing tools for Huntington's Disease
continue to be produced ASO-treated cells. Important advances ininnext generation genome editing tools for Huntington's D
Important advances in next generation improperly. In the vast majority of HD patients, This means, as far as we understand it today, genome editing tools for Huntington’s Disease this leads to two types of huntingtin protein that treatment with ASOs would have to be Work with genome editing techniques (zinc – a mutant huntingtin protein that no longer continued throughout life. Work with fingers andgenome CRISPR)editing brings techniques these tools (zinc fingers and CRISPR) Work with genome editing techniques (zinc fingers functions correctly, and a healthy closer these to use tools in HD closer clinical to trials brings use in HD clinical trials brings these tools closer to use in HD clinical trials huntingtin protein that does. Unlike huntingtin lowering using ASO’s, newer ByMr. Mr. Shawn Shawn Minnig October 31,31, 2016 By Minnigonon October 2016 including finger By techniques Mr. Shawn Minnig on zinc October 31, nucleases 2016 Edited by Dr Jeff Carroll
and C
Edited by Dr Jeff Carroll Let’s Get to Building… and by CRISPR/Cas9 Edited Dr Jeff Carrollare both a form of Recent days have seen a slew of news Inside each of the cells in your body, your DNA genome editing techniques. These amazing emerging regarding the use Recent days have seenthe a slew emerging regarding useof news of something is stored and ofprotected deep in a location new tools allow scientists to target the ultimate have of seen slew of in news the called genome a potential therapytherapy called the nucleus, much like the Recent masterdays source theaproblem HD, emerging the mutantregarding DNA something calledediting genomeasediting as a potential for genetic for genetic diseases like Huntington’s Disease. blueprint for a building that has beensomething locked itself. These tools allow scientists to precisely called genome editing as a potential therapy for gene diseases like Huntington’s Disease. These approaches, which include These approaches, which include exotic away by the construction manager in her target a specific location in the DNA (like the diseases like Huntington’s Disease. These approaches, which in exotic sounding toolszinc like zinc finger nucleases and CRISPR/Cas9, differ sounding tools like finger nucleases and office to prevent it from being harmed. instructions for making the huntingtin protein), CRISPR/Cas9, differ from more traditional exotic sounding toolscarry like zinc nucleases CRISPR/Ca and then out afinger number of usefuland tricks. from more traditional ways reducing the impact of the HD mutation on cells. ways reducing theexciting impactarea of the HD mutation In a real construction site, it would be very What’s new in this of research? fromslow more traditional ways reducing the impact of the HD mutati on cells. and inefficient if each worker were required One of these tricks they can do is to serve What’s in athis exciting area of for research? What’s new in this exciting area of research? to travel to the construction manager’s officenewas sort of stop sign the cell. When the Huntingtin Lowering Refresher to use the same set of instructions when machinery that normally reads DNA arrives at Huntingtin Lowering Refresherrecently surrounding building, and as it turns out the sameHuntingtin is true the mutant HD gene, appropriately designed There has been lots of excitement the advancement Lowering Refresher There has been lots of excitement recently of our cells. genome editing tools can call them off - telling of a new huntingtin lowering, sometimes called gene silencing, surrounding the advancement of a new them lots not to their workrecently at that precise gene.the adva There has been of do excitement surrounding treatment for Huntington’s The first of theseTo drugs to reach huntingtin lowering, disease. sometimes called avoid this human this problem, a working copy This results in no mutant huntingtin mRNA of a new huntingtin called gene for Huntington’s of the instructions or proteinlowering, ever beingsometimes made. Note that gene this issilencin clinicalsilencing, trials in HD, treatment called antisense oligonucleotides (ASO’s), reduce is made that is used as a disease. The first of these drugs to reach template for building proteins instead. This for different than how ASOsThe work, which is drugs by to re treatment Huntington’s disease. first of these the amount of harmful mutant protein that is created by a cell human clinical trials in HD, huntingtin called antisense working copy iscalled messenger RNA, or degrading mRNA that’s already clinical trials in HD, called antisense oligonucleotides (ASO’s) and ultimately limit the(ASO’s), damage thatreduce it can cause. oligonucleotides the mRNA, and it is copied from the original DNA been made. amount of harmful mutant huntingtin protein and sent out into the cell where it is the amount of harmful mutant huntingtin protein that is created b used to along know first trial assessing Those who ha ve that is created bybeen a cellfollowing and ultimately limitthat thethe build many copiesthe of the same protein(s) a An limit important new genome editing tool called and at ultimately the damage that it can cause. damage it can cause. larger scale. CRISPR/Cas9 has recently made a lot of safety of that ASO’s in human HD patients is currently underway people very excited. These tools, borrowed (http://en.hdbuzz.net/204), but some readers might also remember that Those who from ha vecertain been following know that thethem first trial ass Those who have been following along know If our DNA is like the original master blueprint, bacterialalong species who use ASO’s are not the only player in town when it comes to innovative ways to that the first trial assessing the safety of ASO’s then mRNA is a lot like the individualsafety copies as a inkind of immune system, allow cells to of ASO’s human HD patients is currently underway in human patients is currently of the blueprint that are delivered by the insert foreign DNA sequences into their own reduce the HD harmful huntingtin protein. underway (http://en.hdbuzz.net/204), but some readers might also (http://en.hdbuzz.net/204), but some readers construction manager to their crew so that DNA. Really clever humans took those toolsrememb ASO’s only player town when it comes might also remember that ASO’s are not the they can begin to build efficiently. This mightare not fromthebacteria andin re-engineered them totoinnovativ only player in town when it comes to innovative seem confusing, but for our purposereduce all youthe allow scientists to make precise cuts in DNA 1 / 10 harmful huntingtin protein. ways to reduce the harmful huntingtin protein. need to know are the three steps involved in at specific sequences. building a protein: In fact, two other new therapeutic techniques DNA -> mRNA -> protein. In theory, and in the lab, CRISPR techniques known as zinc finger nucleases and CRISPR 1 / 10DNA sequences can be used to cut specific have been generating some buzz recently. ASO’s, Zinc Fingers, & CRISPR: so the cell can no longer read a gene. They Although we have covered both of these Same Goal,Different Means can also be used to direct cells to make approaches previously It’s important to make the distinction between specific changes to DNA sequences - even, (http://en.hdbuzz.net/023), a quick review of the HD gene in DNA and in mRNA because in theory, repairing mutations like the ones how tjeu operate and the differences between they are differently targeted by rapidly that cause HD. Targeting the cause of HD at them will be usefulin understanding some new developing Huntingtin lowering therapies. its root (the HD gene) would ensure that that findings. These include a zoo of different techniques both the mutant huntingtin mRNA and mutant like ASO’s, zinc fingers, and a new approach huntingtin protein are no longer made, and You probably recall called CRISPR/Cas9. At their core, all of these can no longer cause harm. from your earliest therapeutic techniques have the same goal biology classes in mind – to reduce the amount of harmful Safety First! that your DNA mutant huntingtin protein produced in a cell – If you find yourself wondering why we are not provides a detailed but they go about achieving this goal in very already testing these new tools as drugs, it’s set of instructions different ways. because many things need to happen in the for how to build, drug development pipeline to make sure that well, you! Each cell Of the three options, ASO’s have been the final product is both safe and effective in your body is a lot around the longest, which might not surprise before it can be tested in HD patients. like a construction you since they have emerged as the first to site, and your be assessed in human HD patients. ASO’s First, scientists need to figure out ways to get DNA is the master work by telling cells to shoot the messenger, these drugs to the brain where the mutant blueprint with in this case the mRNA intermediate carrying huntingtin protein does most of its damage. instructions for the instructions from DNA to make a protein. This is difficult – our brains are especially good taking the most In a treated cell, ASO drugs literally stick to at keeping things out that might be harmful, basic building blocks (called amino acids) and the mRNA that provides the instructions for and unfortunately it’s not about to give these turning them into functioning proteins that making the harmful mutant huntingtin protein, drugs a free pass. If contribute to all of your unique features and and convince the cell to chop it up so that the we tried to put them in a pill or inject them into make sure that things in your body continue protein can no longer be produced. our blood, our bodies would break them down to run and make them useless long before they smoothly. Many scientists and those in the HD community reach the brain. are very excited by the advancement of ASO We call the DNA instructions for building therapy as a treatment option for HD, but the Since ASO’s have been around a while specific proteins genes, and we each fact remains that ASO therapy does not target longer, scientists have had some extra time to have two copies of the gene for making an the ultimate cause of HD (the faulty HD gene address this problem, although their solution important protein that is called huntingtin. encoded in a person’s DNA) and remains is still far from perfect. The ASOs being used The symptoms associated with Huntington’s one step removed by targeting the mRNA. in the human HD trial have to be injected into disease occur because one of these sets of Because the mutant gene is still present in the fluid that bathes the brain and spinal cord,
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RESEARCH the cerebrospinal fluid. We have every reason to believe this will work, but is obviously more complicated than just swallowing a pill.
“
At their core, all of these therapeutic techniques have the same goal in mind – to reduce the amount of harmful mutant huntingtin protein produced in a cell – but they go about achieving this goal in very different ways
“
Genome editing tools like CRISPR and Zinc Fingers are even more complicated to deliver than their ASO counterparts. This is because they are actually proteins themselves, and those are hard to deliver intact into cells.
To get around this problem, researchers use harmless viruses to hitch-hike the DNA instructions for making these proteins into brain cells. From there, cells are tricked into using the same machinery they use to build their own proteins to build genome editing tools, essentially turning cells into factories for their own drugs! What’s new with Zinc Fingers for HD? Not being ones to shy away from a good challenge, many research teams have been hard at work addressing the previously mentioned issues to make progress toward applying these new techniques to HD. Previously, HDBuzz reported that a group of researchers from Spain had tested a new zinc finger drug that showed some beneficial effects in a mouse model of HD in a shortterm study (http://en.hdbuzz.net/103). Recently, the same research team – led by Mark Isalan, who now resides at Imperial College in London, U.K. - designed and tested an updated version of their drug to see if they could enhance its effects for a longer period of time and reduce the harmful immune response in the brain associated with delivering the drug using AAV’s. After some intense biochemical tinkering, Isalan and colleagues were able to demonstrate that their new and improved zinc finger candidate was more effective than their previous version at reducing the harmful mutant huntingtin protein, was longer lasting, was more selective in targeting only the HD gene, and displayed a much better safety profile than their previous version. These are very exciting findings, indeed, and all positive steps forward in making zinc finger therapy a viable option for treating human HD! This slow, patient, work with Zinc fingers is similar to what happened with ASO drugs, who’ve had a many year head start on genome editing tools. What about CRISPR? Despite being considered the most precise way to conduct genome editing, CRISPR technology is still the new kid on the block and scientists have had much less time to iron out the kinks compared to the other techniques. In an exciting advancement in utilizing CRISPR as a therapeutic option in HD, a team of researchers led by Jong-Min Lee at Massachusetts General Hospital recently developed a CRISPR construct that can selectively edit out the mutant, but not wild-
For all the latest HD research news gonews. to www.hdbuzz.net Huntington’s disease research In plain language. Wr scientists. For the global HD community.
type, copy of the HD gene in cells in a dish. true of CRISPR. Personally, we think that the Taking advantage of the highly-specific progress that has beenin made so fargeneration gives us a Important advances next targeting ability of CRISPR, they were able to lot to be excited about! genome editing tools for Huntington's D instruct treated cells to cut out the mutant HD gene, while leaving the healthy copy intact. Work Thewith authors have no techniques conflicts of(zinc interest genome editing fingers and to declare. For more information about our brings these tools closer to use in HD clinical trials Of course, it is one thing to show that a drug is disclosure policy see our FAQ... effective on cells in a dish, and another thing By Mr. Shawn Minnig on October 31, 2016 entirely to show that it can be effective when Edited Glossary by Dr Jeff Carroll tested in a living organism. This is especially ASOs A type of gene silencing treatment in true with techniques like CRISPR - asRecent far as days which designed DNA molecules are havespecially seen a slew of news emerging regarding the we know today we need a virus to carry the used to switch off a gene something called as aby potential therapy instructions to each of our 100 billion brain CSF A genome clear fluidediting produced the brain, which for gene cells to rescue each of them from thediseases effects like surrounds and supports brain and spinal which in Huntington’s Disease.the These approaches, of the mutant HD gene. cord. huntingtin protein The protein produced exotic sounding like zinc finger nucleases and CRISPR/Ca by thetools HD gene. Another risk is that CRISPR and other genome silencing approach to treating from more gene traditional ways An reducing the impact of theHD HD mutati editing tools modify DNA permanently. This that uses targeted molecules to tell cells not to What’s new in this exciting area of research? is different than drugs like ASOs which are produce the harmful huntingtin protein eventually cleared from the brain, meaning Genome Editing The use of zinc-finger that their effects wear off over time ifHuntingtin they’re nucleases to make changes in DNA. ‘Genome’ Lowering Refresher not delivered again. is a word for all the DNA we each have. There has messenger been lots of excitement RNA A recently messagesurrounding molecule, the adva At first, this idea seems fantastic! If we based on DNA, usedsometimes by cells ascalled the final setsilencin of could a new huntingtin lowering, gene cure HD with only a single treatment, we would of instructions for making a protein. treatment Huntington’s firstthat of these drugs to re certainly love to be able to do it. However, we for amino acid thedisease. building The blocks proteins are still unsure about the long-termclinical effectstrials are made from in HD, called antisense oligonucleotides (ASO’s) associated with permanently deleting the HD CRISPR A system for editing DNA in precise the amountways of harmful mutant huntingtin protein that is created b gene and reducing the amount of huntingtin protein that is created, regardless of whether wild-type opposite and ultimately limit thethe damage that itofcan‘mutant’. cause. Wildits mutant or not. The possibility exists that type huntingtin, for example, is the ‘normal’, permanently deleting the HD gene could leadwho‘healthy’ protein. Those ha ve been following along know that the first trial as to some serious health issues of a different nucleus A part of the cell containing genes safety of ASO’s in human HD patients is currently underway variety to pop up later, and we will need to (DNA) spend a considerable time studying its(http://en.hdbuzz.net/204), effects AAV a virus thatbut cansome be used to deliver readers mightgene also rememb before we know whether it will be safe. therapy drugs to cells. ASO’s are AAV not the only for player in town when itvirus. comes to innovativ stands adeno-associated What Comes Next? reduce the harmful huntingtin protein. There is a still lot of work to be done before genome editing techniques like zinc fingers © HDBuzz 2011-2016. HDBuzz content is and CRISPR treatments will become viable free to share, under a Creative 1 / 10 options for Huntington’s disease, but the Commons Attribution-ShareAlike 3.0 research presented here shows that we’ve Unported License. taken some important steps toward HDBuzz is not a source of medical advice. accomplishing this feat. For more information visit hdbuzz.net While the recent work shows that zinc finger Generated on October 31, 2016 — therapy is effective in a mouse model of HD Downloaded from – whose brains are smaller than a dime – it http://en.hdbuzz.net/228 will be much harder to show that it can be effective in humans, whose brains are much larger, more complex, and present many other challenges to overcome.CRISPR therapy will likely take even more time, since we are only just now getting to the point where we can make plans to test its effectiveness in mouse models of HD. However, this is no reason to become discouraged, and in fact we think that quite the opposite is true! The most exciting part about the current research is that it shows that we have multiple arrows in our quiver as we try to develop huntingtin lowering treatment for HD. Even if it turns out that one option doesn’t work out as we hoped it would, we’re making steady progress developing new therapies that may also provide effective treatments for HD. This idea is one that many are starting to catch on to quickly – recently two pharmaceutical companies, Sangamo Biosciences and Shire Pharmaceuticals, joined forces to accelerate their efforts in developing zinc finger treatment as a therapeutic option for Huntington’s disease. While it will take a while to iron out the kinks, we imagine that it will only be a matter of time before the same becomes
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WEBSITE LAUNCH AT STORMONT Over the past year Sorcha has been working on developing a new website for HDANI- carefully identifying and storing resources away and writing new factsheets for patients, carers and professionals. With the invaluable help of Christine Cahoon of Platypus Consulting a new site was designed that is clean, fresh, accessible and full of information. We hope you find the site useful and easy to use and is somewhere you can direct friends, family and health care staff with questions about HD. It is a one stop shop for information about HD, linking all the latest research news, factsheets, medical resources, online and local support groups and video resources in one place. Our website was launched at Stormont on Monday 26th September to mark the start of HD Awareness Week and as a valuable opportunity to raise the profile of HDANI among politicians as we continue to lobby for improved services. The event was attended by carers, patients and family members who were able to convey the impact of the disease to the dozens of MLAs who joined us including former and current Health Ministers, members of the Health Committee and the First Minister Arlene Foster. Special thanks to Paula Bradshaw MLA for sponsoring the event and to all who attended. Photos by our volunteer professional photographer Alice Wade of Bluebell Photography who was on hand all week! You can easily become a member of HDANI, find out where your local support groups is, send us questions, become a volunteer, order leaflets or merchandise, make a one off or regular donation or download one of our factsheets that cover everything from nutrition and dental care to driving.
Visit us today www.hdani.org.uk The First Minister meet baby Adam and his mum Tina
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WEBSITE LAUNCH AT STORMONT
Four generations of the Clark family meet the First Minister
Group photo with the First Minister
Nicola Mallon lends her support
MLAs meeting with family members
Thomas Buchanan signs up
Health Minister Michelle O Neill pledges her support
First Minister Arlene Foster supports HD families
Robbie Butler lends his support
UUP leader Mike Ritchie with member Dorothy O Kane
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HD AWARENESS WEEK Another successful awareness week saw over 80 health and social care professionals attend a HD training event at Belfast City Hospital on September 29th. An audience of doctors, nurses, therapists, care staff and social workers heard from medical experts about various aspects of HD management including medication, nutrition, communication and music therapy. Most powerful of all though were the presentations from Jennifer, Errol and Ashley on how HD impacts the whole family and the importance of listening to the carer in order to understand the patient’s needs. The following day over 120 attended our family conference and again heard expert speaker presentations on all aspects of HD management as well as the latest research developments for Ed Wild. They also benefited from a range of service providers exhibiting in the lobby and workshops on physio and bereavement. Members were treated to free therapy sessions from volunteers offering massage and reflexology all in the comfort of the four star surroundings of La Mon Hotel and Country Club. Thanks to all those involved in helping throughout the week especially our speakers, our photographer Alice, our tireless staff and volunteers.
Erin Probert presented on Speech, Language and Communication
A full house at conference
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Lydia Fletcher, Angie Smyth, Erin Probert, Michael Jenkins, Sorcha McGuinness, Dr Jennifer Hoblyn, Errol Walsh and Dr Ed Wild
Michael Jenkins delivered a presentation on music therapy
Paula and Eoin McElhinney
Laura Clark was surprised by family with a birthday cake
HD AWARENESS WEEK
Megan Donnelly, Ashley Clarke, Sorcha McGuinness and Dorothy O Kane help the Ospreys raise HD Awareness
Errol introduces Anthony
Michelle, Ashley, Amy, Chloe and Joy
Trustee and musician Anthony McQuillan with Dorothy
Plenty of interested faces Lydia Fletcher discussed Nutrition in HD
Sharon Rosbotham with members of the Welsh rugby team the Ospreys
Some of our posters and leaflets The Clark family with Eoin McElhinney and Glen Spence
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FUNDRAISING A huge thank you to all those who donated time, skills and money to HDANI over the past few months. We know that there have been other events going on so please do let us know when you lodge money as sometimes it can be impossible to trace who the donor is and remember to send us your pictures so we can share your good work!! Thank you also to our regular standing order donors. Setting up a standing order is a simple way to help with our work. We are also set up for payroll giving so you can donate tax free directly from your salary. Please get in touch if you would like to donate via your wages or would like HDANI to present at your workplace.
Raffle
Thank you to all those who bought and sold tickets for our raffle and sponsored prizes which helps towards the cost of our annual conference. We sold over 2200 tickets at a £1 each. The lucky winners were: Laurie (C/O Olive Campbell) - La Mon hotel break Patricia Kincaid – Glenavon Hotel break Liam Turner - Belfast Giants family pass Rosetta Donnelly - Nathan Carter tickets Tommy Kidd - David Hull promotion tickets Trevor Pickering - Carvery lunch for two at the Radisson Limavady Caoimhe Cunningham - £50 Yo Sushi voucher Nicolle Loughran - £25 Yo Sushi voucher Liam McNamee - Badgers Restaurant voucher Derek Russell - Leisureplex Family Pass Briege McNulty – Browns Restaurant voucher Pat McKay - Tesco voucher Maria Mulcahy - Biscuits & wine
Collection boxes
Please get in touch if you would like a collection box for your local business, work, school or sports centre. Not only do they help raise funds but also vital awareness of HD. We will send you our new box for you to deliver and when it’s full the business will call you to collect and a member of our staff or board will collect, count and lodge the money and issue you with a thank you for the store.
Since our last newsletter we’ve received collection box funds from: Dessie Farry £200 Orangefield Day To Day Armagh £23.81 and £38.86 Street Collection Laura Clark £44.26 Jean Calderwood £47.64 A huge thank you to Laura Clark and he Sportshut Ballymena £9.50 which concludes their year of partnering street collection on 12th August. with HDANI as their Charity of the Year. U
Street Collection
A huge thank you to Laura Clark and her band of HD heroes who raised over £187 at their Derry street collection on 12th August.
DONATIONS IN MEMORY
U
We were thrilled to receive an incredible £5,000 from BP McKeefrey a transport solutions company in Swatragh. This follows a previous donation of the same amount at Christmas.
We were thrilled to receive an incredible £5,000 from BP McKeefrey a transport solutions company in Swatragh. This follows a previous donation of the same
When a loved one passes away we are very grateful when people consider donations in lieu of flowers.
Huge thanks to Amanda McBurney and Barney McGuckian and their friends and family who donated £1,000 in memory of the late Andrew Law.
Corporate Giving
CORPORATE GIVING
amount at Christmas. Please think about the companies in your local community that might support our efforts- where do Please think companies your or your family work?about study? shop?the get your car serviced? Supportin our 3your Companylocal Christmascommunity Challenge! that might support our efforts- where do your or your family Community Events work? study? shop? get your car serviced? Support our 3 Laura Kane and colleagues Kevin McNamara, Richard Knipe, Jim Frazer and Anthony Magee from Company Christmas Trading Standards who raised £77.50 from Challenge! their Belfast Marathon relay collection. U
Mark Smyth (featured in our last newsletter) has submitted £4860 of funds raised through his Marathon des Sables and his committed to further fundraising- mighty work!
COMMUNITY EVENTS
We were delighted to receive a cheque for £1000 from Killyleagh and St Johns Community Association. What a fantastic community!
A £20 donation was received from Rose McGurran, Gortin
Laura Kane and colleagues Kevin McNamara, Richard Knipe, Jim Frazer and Anthony Magee from Trading Angie receives a cheque for £160.45 Huge thanks to Amanda McBurney and Standards who raised £77.50 from their Belfast Marathon from Gordon Robinson from his Thank Barney McGuckian and friends and you to Sylvia Mallon and family whotheir collected £300 from family and friends in lieu of flowers relay collection. annual sit out in Portadown. He for her family who Jill donated £1,000 of Sylvia late daughter Mallon. Pictured aboveinarememory Gordon Robinson, Mallon, Dolores is pictured with his partner Sylvia Mallon.
Street Collection
McBride (HDANI Support Worker) and Rose Halpin (HDANI member). the A hugelate thank youAndrew to Laura Clark andLaw. her band of HD heroes who raised over £187 at their Derry U
street collection on 12th August.
A huge thank you to all those who donated time, skills and money to HDANI over the past few months. We know that there have been other events going on so please do let us know when you lodge money as sometimes it can be impossible to trace who the donor is and remember to send us your pictures so we can share your good work!! Thank you also to our regular standing order donors. Setting up a standing order is a simple way to help with our work. We are also set up for payroll giving so you can donate tax free directly from your salary. Please get in touch if you would like to donate via your wages or would like HDANI to present at your workplace.Corporate Giving U
U
Raffle
Thank you to all those who bought and sold tickets for our raffle and sponsored prizes which helps towards the cost of our annual conference. We sold over 2200 tickets at a £1 each. The lucky winners were:
Thank you to Sylvia Mallon and family
Following the recent passing of their Mum Daisy the McNulty family, which includes Angie, Sharon and baby Daniel (pictured) as well as Daniel, Mickey, Ronnie and James, raised £500 for HDANI in lieu of flowers.
Mark Smyth (featured in our last newsletter) has submitted £4860 of funds raised through his Marathon des Sables and his committed to further fundraising- mighty work! We were delighted to receive a cheque for £1000 from Killyleagh and St Johns Community Association. What a fantastic community! A £20 donation was received from Rose McGurran, Gortin
Laurie (C/O who Olive Campbell) - La Mon hotel break collected £300 from family and Patricia Kincaid – Glenavon Hotel break friends in family lieu of flowers for£300her you to Sylvia Mallon and pass family who collected from late family and friends in lieu of flowers LiamThank Turner - Belfast Giants Rosetta Donnelly - NathanJillCarter tickets for her late daughter Mallon. Pictured above are Gordonabove Robinson, Sylvia Mallon, Dolores daughter Jill Mallon. Pictured Tommy Kidd David Hull promotion tickets McBride (HDANI Support Worker) and Rose Halpin (HDANI member). are- Carvery Gordon Sylvia Mallon, Trevor Pickering lunch Robinson, for two at the Radisson Limavady Caoimhe Cunningham - £50 Yo Sushi voucher Dolores McBride (HDANI Support Nicolle Loughran - £25 Yo Sushi voucher Following the recent passing of their Mum Daisy the McNulty family, which includes Angie, Sharon and Liam McNamee - Badgers Restaurant voucher Halpin (HDANI Worker) and Rose Derek Russell - Leisureplex Family Pass baby Daniel (pictured) as well as Daniel, Mickey, Ronnie and James, raised £500 for HDANI in lieu of member). Briege McNulty – Browns Restaurant voucher flowers. Pat McKay - Tesco voucher Maria Mulcahy - Biscuits & wine