HDANI Newsletter Spring 2013

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

Huntington’s Disease Association Northern Ireland Newsletter

Spring 2013

Message from the Chair

hours in a number of areas of the Association’s project development and partnership working.

Dear friends and supporters, It’s been a sad and painful start to the year for eight families who are grieving for the loss of loved ones. Our deepest sympathies and condolences go out to all of them in their sorrow. On a positive note, the optimism, excitement and real hope that scientific research continues to bring to all of us who are living with HD is remarkable and we are grateful to all those scientists and researchers who are bringing effective treatments for HD closer by the day. Despite the recession we have, so far, managed to hold our own in these difficult financial times. However, continuing to develop services and supports for HD families and young people still requires significant investment and we cannot afford to be complacent, so I appeal to everyone to redouble their efforts this year to support our work. It’s been a very busy time for the Board and many of our volunteers recently. Grace Henry and Christine Collins in particular have devoted long

The main focus since Christmas and New Year has been the Youth and Family Engagement Initiative funded by the Public Health Agency, and our thanks goes out to the Board and the various sub-committees who planned and carried out this vitally important work. We are particularly grateful for the sterling work of Catherine ‘Cat’ Martin whose depth of knowledge and experience has proved invaluable in this project. It’s worth remembering that the long hours and special skills that all of our board bring to our development as an Association are entirely voluntary and often go well above and beyond our expectations. We are extremely grateful to them all and our progress is now tangible thanks to their hard work and commitment. Sincere thanks to everyone who has worked, and continues to work, so hard on our behalf and I’m confident that with your full support we can continue to make real progress in 2013 and beyond.

Marilyn Kerr (Chair)

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

Website: www.hdani.org.uk

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New Sponsorship We remain extremely grateful to past sponsors GPS Colour Graphics and Crossland Tankers & BP McKeefry all of whom have generously continued to support us in various ways. Thank you! We are also very happy to announce that we have recently secured the support of two new sponsors for the forthcoming year. SDC Trailers from Toomebridge have committed a generous monthly donation to HDANI over the next two years. Many thanks to SDC! The Abbey Centre branch of Marks & Spencers has nominated us as their charity for 2013 and will donate the proceeds of various charitable events over the coming year to HDANI. Many thanks!

Donations and Fundraising personal and/or family connections with the companies concerned. HDANI simply cannot compete for funding on the same level as mainstream charities and it’s almost always the personal connection that makes the difference. So, please, if you have such a connection please remember to lobby for support for HDANI. We’ve got an ambitious development programme ahead of us over the next few years (including the initiation of a youth and family service) and we need all the help we can get! Thanks to Eleanor Kelly, Betty Alcorn, Paula McConaghy and Olive Campbell

Many thanks to everyone who has contributed to our funds in whatever way they have elected to do so. At present we have eight members who donate by direct debit each month which brings in £96.00 per month. Could we encourage you or any of your families or friends to consider donating this way?

Donations Donations via Bank – £293.50 Mrs Alcorn, Mrs Logue, Mrs Watson and Mrs Moore – £80.00

We are enormously grateful to all our sponsors, especially in these difficult economic times.

Ms V McKay – £350.00

It’s worth noting that in, almost every case, corporate sponsorship has been secured by individual members through

B P McKeefry, Swatragh – £1,000.00

What the Board’s Been Doing This has been a particularly busy period for the Board, and indeed for the many volunteers who have contributed time and energy to the work and activities of HDANI. In addition to all the work involved in the Family and Youth Engagement Initiative, we have been working with the help of ‘Community Change’ to review and update our Strategic and Operational Plans (to check on the progress we have made over the last two years, and plan our way ahead; what do we mean to do; how we mean to do it). These new plans will form the backbone of all that HDANI is aiming to achieve over the next three years and have given rise to some extremely important decisions currently under consideration at board level which will have an immense impact on the future of HDANI (more of these developments in the next newsletter).

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We are lining up a series of funding applications to try and make sure there is money coming in steadily over the next two years to drive forward the projects and programmes that HDANI is committed to achieving. These include training for medical and other professionals; more publicity and awareness through the Huntington’s Disease Awareness Week in June; Conference in September with a strong Youth element; development of a Youth Programme; continued development of the website and of the Telephone Support Service, as well as essential daily support and advocacy for individuals and families across Northern Ireland. Christine Collins Vice Chair

Virgin Money Giving – £48.56 St. Anne’s Cathedral Good Samaritans’ (Black Santa Christmas Sitout) – £800.00 IMO the late Mr L Brennan – £20.00 Mrs M Kerr – £66.60 IMO the late Mr T Byrne – £625.00

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

IMO the late Anna Thompson – £1,120.00

The Henry Family – £107.40

Anon – £5.00

Mrs Alcorn’s Friends – £19.43

Events Limavady Support Group, Christmas Disco – £322.00 The Thompson Family (fundraiser) – £995.00 Omagh Support Group, ASDA bag-pack – £250

Collection Boxes The Spirit Store, Trillick – £60.00 Saveway Spar – £41.31 I Haywood – £15.30

Penny Jars

Mrs E Reavie – £39.43 Ms S Cooke – £28.31 Mr N Alberts – £5.69 Mr C Warmington – £92.59 Mrs M Kerr – £42.40 Mrs P McKay – £24.87

Pin Sales £256.00

Forthcoming Events: We have three teams supporting HDANI in the Belfast marathon this year: Thanks and good luck to GPS Colour Graphics, Marks & Spencer (Abbey Centre) and Bronagh Boyd & friends!

The ‘N.I. Bikers and Trikers Riding for Charity’ club are sponsoring a motor cycle run for HDANI on 14th April…… Many thanks and good luck to them!

3

New Sponsorship We remain extremely grateful to past sponsors GPS Colour Graphics and Crossland Tankers & BP McKeefry all of whom have generously continued to support us in various ways. Thank you! We are also very happy to announce that we have recently secured the support of two new sponsors for the forthcoming year. SDC Trailers from Toomebridge have committed a generous monthly donation to HDANI over the next two years. Many thanks to SDC! The Abbey Centre branch of Marks & Spencers has nominated us as their charity for 2013 and will donate the proceeds of various charitable events over the coming year to HDANI. Many thanks!

Donations and Fundraising personal and/or family connections with the companies concerned. HDANI simply cannot compete for funding on the same level as mainstream charities and it’s almost always the personal connection that makes the difference. So, please, if you have such a connection please remember to lobby for support for HDANI. We’ve got an ambitious development programme ahead of us over the next few years (including the initiation of a youth and family service) and we need all the help we can get! Thanks to Eleanor Kelly, Betty Alcorn, Paula McConaghy and Olive Campbell

Many thanks to everyone who has contributed to our funds in whatever way they have elected to do so. At present we have eight members who donate by direct debit each month which brings in £96.00 per month. Could we encourage you or any of your families or friends to consider donating this way?

Donations Donations via Bank – £293.50 Mrs Alcorn, Mrs Logue, Mrs Watson and Mrs Moore – £80.00

We are enormously grateful to all our sponsors, especially in these difficult economic times.

Ms V McKay – £350.00

It’s worth noting that in, almost every case, corporate sponsorship has been secured by individual members through

B P McKeefry, Swatragh – £1,000.00

What the Board’s Been Doing This has been a particularly busy period for the Board, and indeed for the many volunteers who have contributed time and energy to the work and activities of HDANI. In addition to all the work involved in the Family and Youth Engagement Initiative, we have been working with the help of ‘Community Change’ to review and update our Strategic and Operational Plans (to check on the progress we have made over the last two years, and plan our way ahead; what do we mean to do; how we mean to do it). These new plans will form the backbone of all that HDANI is aiming to achieve over the next three years and have given rise to some extremely important decisions currently under consideration at board level which will have an immense impact on the future of HDANI (more of these developments in the next newsletter).

2

We are lining up a series of funding applications to try and make sure there is money coming in steadily over the next two years to drive forward the projects and programmes that HDANI is committed to achieving. These include training for medical and other professionals; more publicity and awareness through the Huntington’s Disease Awareness Week in June; Conference in September with a strong Youth element; development of a Youth Programme; continued development of the website and of the Telephone Support Service, as well as essential daily support and advocacy for individuals and families across Northern Ireland. Christine Collins Vice Chair

Virgin Money Giving – £48.56 St. Anne’s Cathedral Good Samaritans’ (Black Santa Christmas Sitout) – £800.00 IMO the late Mr L Brennan – £20.00 Mrs M Kerr – £66.60 IMO the late Mr T Byrne – £625.00

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

IMO the late Anna Thompson – £1,120.00

The Henry Family – £107.40

Anon – £5.00

Mrs Alcorn’s Friends – £19.43

Events Limavady Support Group, Christmas Disco – £322.00 The Thompson Family (fundraiser) – £995.00 Omagh Support Group, ASDA bag-pack – £250

Collection Boxes The Spirit Store, Trillick – £60.00 Saveway Spar – £41.31 I Haywood – £15.30

Penny Jars

Mrs E Reavie – £39.43 Ms S Cooke – £28.31 Mr N Alberts – £5.69 Mr C Warmington – £92.59 Mrs M Kerr – £42.40 Mrs P McKay – £24.87

Pin Sales £256.00

Forthcoming Events: We have three teams supporting HDANI in the Belfast marathon this year: Thanks and good luck to GPS Colour Graphics, Marks & Spencer (Abbey Centre) and Bronagh Boyd & friends!

The ‘N.I. Bikers and Trikers Riding for Charity’ club are sponsoring a motor cycle run for HDANI on 14th April…… Many thanks and good luck to them!

3

In Memoriam Anna Thompson 28/8/1937 – 3/1/2013 In memory of our dear Mum, Nana and Sister, Anna who passed away very suddenly but peacefully in her sleep on 3rd January 2013 at Cornfield Nursing Home. Anna was diagnosed with Huntington’s disease in 1991 and as her condition deteriorated she never complained, facing her illness with grace, appreciating all the people who cared for her. Anna worked hard all her life whilst bringing up her family, even after her husband’s untimely death leaving her a widow at 42 years of age. She maintained her positive outlook on life and her sense of humour was evident to the end. She was a wonderful Mum who loved her family and friends and always enjoyed the craic! She is greatly missed by her loving family and all who knew her.

Tommy Byrne September 24th 1951 – January 4th 2013 When I Must Leave You When I must leave you for a little while Please do not grieve and shed wild tears And hug your sorrows to you through the years But start out bravely with gallant smile And for my sake and in my name Live on and do all things the same Feel not your loneliness on empty days but Fill each waking hour in useful ways Reach out your hand in comfort and in cheer And I in turn will comfort you and hold you And never be afraid to die For I am waiting for you in the sky In loving memory from Tommy’s wife Kathleen Byrne and family

Philomena Turner (Nee Scullion) 21st July 1944–21st January 2013 Loving Wife of Willie Turner Loving Mother of Liam, Barry, Paula, Tracy, Tina and Joe Philomena was diagnosed with Huntington’s disease in May 1997. She fought a long hard battle, and although she never complained, HD took its toll on her life as she slowly lost control of her ability to continue with her everyday chores until eventually she had to rely on the use of a wheelchair to get her around. Philomena didn’t adjust to this easily as she was always very independent and liked to do things for other people, but family and friends helped her with her everyday needs and she was very well cared for. After a second spell in hospital with pneumonia, her final wish was to go home to her own bed and her own family. Thankfully the doctors agreed and Philomena passed away peacefully at home three nights later with her husband and all the family at her bedside. Much loved and sorely missed by family and friends.

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Rosalind Watson (nee Thompson) passed away peacefully on

the 12 February 2013 after a long battle with HD at the Stewart Memorial in Bangor. Ros was born in South Africa and moved to Southern Rhodesia with her family in the late 1940’s. She took up a career in child care before assisting her father in his refrigeration business. Through her father she met her husband Ken and they were married in 1966. They had two boys in the coming years. She was a good mother to both boys and brought them up with strong family principled values. In the late 1990’s she was diagnosed with HD and in 2003 moved to Northern Ireland to get better care. In 2008/9 she was moved into Stewart Memorial where she received the best possible care and help for which her family is most grateful. Whilst she will be sorely missed, peace has finally come to her after what has been a very long and brave battle. A big thank you must go out to the HDANI for their support and assistance to Ros and her family. Rest in Peace Ros.

Raymond Smyth Raymond was born on July 31st 1965 and passed away on Feb 23rd 2013 at Phoenix Nursing Home in Newtownards. Raymond was the youngest son of the late Robert and Eileen Smyth, and brother to Colin, Brian, Stephen, Harry and his sister Karen… and also to his late brother David. He will be sadly missed by all his family and friends. At peace now. The Smyth family would specially like to thank everyone who helped Raymond through the long years of his illness.

Joe Harkin Joe Harkin of 4 Westfield Terrace, Sion Mills, Co. Tyrone passed away peacefully in Bell Gray Nursing home in Newtownstewart on Tuesday March 12th aged 70. After a long and courageous struggle with Huntington’s disease Joe is now at peace. Mourned and sorely missed by his wife Mary, son Kieran and the wider family circle.

Daniel Fee’s painting By kind permission of his Aunt Frances, I just wanted to share a photo of a painting by the late Daniel Fee who passed away age 27 on April 22nd 2012. It was one of a small number that Daniel painted for his family members. Despite his many trials and tribulations, and having had more than his fair share of reasons to be downhearted and sorry for himself, Daniel always struck me as an eternal optimist. No matter how often he fell down he just kept on getting up again and moving forward with hope and determination. The enigmatic script in the top left hand corner reads “If you are suffering in your life right now, I can guarantee that this condition is tied up with some kind of attachment to how things should be going”…. Whether by ‘condition’ he meant HD in particular or suffering in general, I read his words as a positive message of hope and inspiration… this is reinforced for me by depictions of the sun shining in each corner of the painting, a flower to signify growth and a heart in the palm of a hand… and most of all by the word ‘LIFE’ written large in the bottom right hand corner. Daniel loved life and his memory remains an inspiration to everyone whose life he touched.

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In Memoriam Anna Thompson 28/8/1937 – 3/1/2013 In memory of our dear Mum, Nana and Sister, Anna who passed away very suddenly but peacefully in her sleep on 3rd January 2013 at Cornfield Nursing Home. Anna was diagnosed with Huntington’s disease in 1991 and as her condition deteriorated she never complained, facing her illness with grace, appreciating all the people who cared for her. Anna worked hard all her life whilst bringing up her family, even after her husband’s untimely death leaving her a widow at 42 years of age. She maintained her positive outlook on life and her sense of humour was evident to the end. She was a wonderful Mum who loved her family and friends and always enjoyed the craic! She is greatly missed by her loving family and all who knew her.

Tommy Byrne September 24th 1951 – January 4th 2013 When I Must Leave You When I must leave you for a little while Please do not grieve and shed wild tears And hug your sorrows to you through the years But start out bravely with gallant smile And for my sake and in my name Live on and do all things the same Feel not your loneliness on empty days but Fill each waking hour in useful ways Reach out your hand in comfort and in cheer And I in turn will comfort you and hold you And never be afraid to die For I am waiting for you in the sky In loving memory from Tommy’s wife Kathleen Byrne and family

Philomena Turner (Nee Scullion) 21st July 1944–21st January 2013 Loving Wife of Willie Turner Loving Mother of Liam, Barry, Paula, Tracy, Tina and Joe Philomena was diagnosed with Huntington’s disease in May 1997. She fought a long hard battle, and although she never complained, HD took its toll on her life as she slowly lost control of her ability to continue with her everyday chores until eventually she had to rely on the use of a wheelchair to get her around. Philomena didn’t adjust to this easily as she was always very independent and liked to do things for other people, but family and friends helped her with her everyday needs and she was very well cared for. After a second spell in hospital with pneumonia, her final wish was to go home to her own bed and her own family. Thankfully the doctors agreed and Philomena passed away peacefully at home three nights later with her husband and all the family at her bedside. Much loved and sorely missed by family and friends.

4

Rosalind Watson (nee Thompson) passed away peacefully on

the 12 February 2013 after a long battle with HD at the Stewart Memorial in Bangor. Ros was born in South Africa and moved to Southern Rhodesia with her family in the late 1940’s. She took up a career in child care before assisting her father in his refrigeration business. Through her father she met her husband Ken and they were married in 1966. They had two boys in the coming years. She was a good mother to both boys and brought them up with strong family principled values. In the late 1990’s she was diagnosed with HD and in 2003 moved to Northern Ireland to get better care. In 2008/9 she was moved into Stewart Memorial where she received the best possible care and help for which her family is most grateful. Whilst she will be sorely missed, peace has finally come to her after what has been a very long and brave battle. A big thank you must go out to the HDANI for their support and assistance to Ros and her family. Rest in Peace Ros.

Raymond Smyth Raymond was born on July 31st 1965 and passed away on Feb 23rd 2013 at Phoenix Nursing Home in Newtownards. Raymond was the youngest son of the late Robert and Eileen Smyth, and brother to Colin, Brian, Stephen, Harry and his sister Karen… and also to his late brother David. He will be sadly missed by all his family and friends. At peace now. The Smyth family would specially like to thank everyone who helped Raymond through the long years of his illness.

Joe Harkin Joe Harkin of 4 Westfield Terrace, Sion Mills, Co. Tyrone passed away peacefully in Bell Gray Nursing home in Newtownstewart on Tuesday March 12th aged 70. After a long and courageous struggle with Huntington’s disease Joe is now at peace. Mourned and sorely missed by his wife Mary, son Kieran and the wider family circle.

Daniel Fee’s painting By kind permission of his Aunt Frances, I just wanted to share a photo of a painting by the late Daniel Fee who passed away age 27 on April 22nd 2012. It was one of a small number that Daniel painted for his family members. Despite his many trials and tribulations, and having had more than his fair share of reasons to be downhearted and sorry for himself, Daniel always struck me as an eternal optimist. No matter how often he fell down he just kept on getting up again and moving forward with hope and determination. The enigmatic script in the top left hand corner reads “If you are suffering in your life right now, I can guarantee that this condition is tied up with some kind of attachment to how things should be going”…. Whether by ‘condition’ he meant HD in particular or suffering in general, I read his words as a positive message of hope and inspiration… this is reinforced for me by depictions of the sun shining in each corner of the painting, a flower to signify growth and a heart in the palm of a hand… and most of all by the word ‘LIFE’ written large in the bottom right hand corner. Daniel loved life and his memory remains an inspiration to everyone whose life he touched.

5

Youth & Family Engagement Initiative The Launch of this initiative, funded by the Public Health Agency (PHA), was held aboard the Belfast Barge at Lanyon Quay on December 6th. The idea was to gain some media coverage to advertise the engagement project to as wide an audience as possible in the hope of attracting interest from that section of the HD community that we know exists across the country but which doesn’t engage with our Association or other HD families in the community and remains in isolation. We understand that, for many families living with HD, the issue of stigma is still very much in people’s minds and there is still a reluctance to associate their family network with this condition for fear of exposing them to that stigma. However, while there is still work to do in raising awareness, much has changed in the past five years in terms of public perception of HD and similar neurological conditions and health issues in general, not to mention huge optimism in terms of medical research. Also, there is the ever-present taboo of broaching the subject of genetic inheritance with children and the wider family for fear of adverse reaction and impact. The internet has changed everything for most people and is not only an incredibly useful tool, but also a potential hazard on many levels. Just about any information imaginable is out there to tap into and one of those hazards is the propagation and availability of inaccurate and potentially damaging information. Engagement with HDANI and HDANI-YO (the new online Facebook network for HD youth) can help to mitigate this risk and steer people towards accurate and reliable online sources. A lot of hard work took place between November and the end of the Youth & Family Engagement Initiative in March 2013. The key HDANI officers running the project availed of frequent support and input from the PHA and a working group was set up to plan and organise the structure of the engagement and various key events. Catherine ‘Cat’ Martin from Scotland was contracted to oversee the project and schedule the work which involved meeting families and their children to outline the aims of the project, establish the basis of a youth

6

network across Ireland and to organise an Open Weekend towards the end of the project to consult with all those who had taken part and to formulate a plan to take the initiative forward into the future. The Open Weekend was a great success and through a series of workshops involving separate groups of ‘Teens’ (12-17), Young Adults (over 18) and Parents, the aims and the needs of young people and their families was teased out and written down as a basis for moving forward. Younger children were looked after in a crèche and Saturday evening and Sunday afternoon was given over to a variety of sporting and leisure activities organised by the Share Village in Enniskillen who hosted the event. Martin Quinn is the Regional ‘Personal and Public Involvement’ (PPI) Lead for the Public Health Agency and he generously gave up his own leisure time to come along and address the opening of the event and it was very encouraging and inspiring to hear what he had to say…

end a meeting of the young adults will take place to elect a steering group from their own ranks. The whole process will be overseen by Cat Martin with whom the young adults have tremendous empathy and whom they trust to understand their issues and help them to take the reins of their own future in relation to HD. In turn HDANI will provide whatever support it can to support the independence of the Youth Steering Group. Many thanks to everyone who worked so hard to make this initiative a resounding success!!

Message from Cat: “It has been my pleasure to meet and work with such an inspirational group of people over the last few months. HDANI are in a unique and fortunate position that many HDAs throughout the world struggle to understand, never mind achieve. HDANI has young people who want to work with them, be part of the organisation now, to help shape its future and to make life for others impacted by HD better informed, full of hope and supported. This initiative has proved the need for dedicated services for young people and that the young

people themselves need to be supported, encouraged and developed to lead their service. HD now offers many opportunities for families and young people to be involved and informed. These opportunities are what breaks down the barriers, dissolves the stigma and improves our ability to deal with HD and all its complexities. The open weekend highlighted how positive young people’s attitude is to HD and their future. They are not as “afraid” of what might happen, they know their options, they believe that having a positive attitude and living life to the fullest is the best way to beat HD. This shows that open appropriate communication with young people about HD is healthy, productive and doesn’t ruin their lives. HDANI wants to help families live happier, informed and hopefully lives together and this project is being led by an inspiring group of young people and parents who truly believe that. Young people are not just the future, they are the present that will shape the future. This is their time to shine hope on us all.”

“The key message that I want to get across today is that the PHA are listening to you the service user, the carer, the family member, the friend. We know that your experience of being listened to and of being involved hasn’t always been what you would have expected, or what it should have been. We acknowledge that the Health and Social Care System needs to do more. Not only do we need to just listen to what you have to say, but to actually take that on board. Many things can be done to improve people lives and services that don’t necessarily require resources, but where they do, given the tight financial circumstances, that means essentially it has to be done from what we currently have. We want you to be a partner in informing priorities, in helping to shape, redesign and evaluate services. We are committed to facilitating your voice to be heard. We commend this initiative and look forward to the outcome of the project. “ The next step is for the Youth Network to find its feet and its own voice to help guide the direction of a conceptual youth service. To this

7

Youth & Family Engagement Initiative The Launch of this initiative, funded by the Public Health Agency (PHA), was held aboard the Belfast Barge at Lanyon Quay on December 6th. The idea was to gain some media coverage to advertise the engagement project to as wide an audience as possible in the hope of attracting interest from that section of the HD community that we know exists across the country but which doesn’t engage with our Association or other HD families in the community and remains in isolation. We understand that, for many families living with HD, the issue of stigma is still very much in people’s minds and there is still a reluctance to associate their family network with this condition for fear of exposing them to that stigma. However, while there is still work to do in raising awareness, much has changed in the past five years in terms of public perception of HD and similar neurological conditions and health issues in general, not to mention huge optimism in terms of medical research. Also, there is the ever-present taboo of broaching the subject of genetic inheritance with children and the wider family for fear of adverse reaction and impact. The internet has changed everything for most people and is not only an incredibly useful tool, but also a potential hazard on many levels. Just about any information imaginable is out there to tap into and one of those hazards is the propagation and availability of inaccurate and potentially damaging information. Engagement with HDANI and HDANI-YO (the new online Facebook network for HD youth) can help to mitigate this risk and steer people towards accurate and reliable online sources. A lot of hard work took place between November and the end of the Youth & Family Engagement Initiative in March 2013. The key HDANI officers running the project availed of frequent support and input from the PHA and a working group was set up to plan and organise the structure of the engagement and various key events. Catherine ‘Cat’ Martin from Scotland was contracted to oversee the project and schedule the work which involved meeting families and their children to outline the aims of the project, establish the basis of a youth

6

network across Ireland and to organise an Open Weekend towards the end of the project to consult with all those who had taken part and to formulate a plan to take the initiative forward into the future. The Open Weekend was a great success and through a series of workshops involving separate groups of ‘Teens’ (12-17), Young Adults (over 18) and Parents, the aims and the needs of young people and their families was teased out and written down as a basis for moving forward. Younger children were looked after in a crèche and Saturday evening and Sunday afternoon was given over to a variety of sporting and leisure activities organised by the Share Village in Enniskillen who hosted the event. Martin Quinn is the Regional ‘Personal and Public Involvement’ (PPI) Lead for the Public Health Agency and he generously gave up his own leisure time to come along and address the opening of the event and it was very encouraging and inspiring to hear what he had to say…

end a meeting of the young adults will take place to elect a steering group from their own ranks. The whole process will be overseen by Cat Martin with whom the young adults have tremendous empathy and whom they trust to understand their issues and help them to take the reins of their own future in relation to HD. In turn HDANI will provide whatever support it can to support the independence of the Youth Steering Group. Many thanks to everyone who worked so hard to make this initiative a resounding success!!

Message from Cat: “It has been my pleasure to meet and work with such an inspirational group of people over the last few months. HDANI are in a unique and fortunate position that many HDAs throughout the world struggle to understand, never mind achieve. HDANI has young people who want to work with them, be part of the organisation now, to help shape its future and to make life for others impacted by HD better informed, full of hope and supported. This initiative has proved the need for dedicated services for young people and that the young

people themselves need to be supported, encouraged and developed to lead their service. HD now offers many opportunities for families and young people to be involved and informed. These opportunities are what breaks down the barriers, dissolves the stigma and improves our ability to deal with HD and all its complexities. The open weekend highlighted how positive young people’s attitude is to HD and their future. They are not as “afraid” of what might happen, they know their options, they believe that having a positive attitude and living life to the fullest is the best way to beat HD. This shows that open appropriate communication with young people about HD is healthy, productive and doesn’t ruin their lives. HDANI wants to help families live happier, informed and hopefully lives together and this project is being led by an inspiring group of young people and parents who truly believe that. Young people are not just the future, they are the present that will shape the future. This is their time to shine hope on us all.”

“The key message that I want to get across today is that the PHA are listening to you the service user, the carer, the family member, the friend. We know that your experience of being listened to and of being involved hasn’t always been what you would have expected, or what it should have been. We acknowledge that the Health and Social Care System needs to do more. Not only do we need to just listen to what you have to say, but to actually take that on board. Many things can be done to improve people lives and services that don’t necessarily require resources, but where they do, given the tight financial circumstances, that means essentially it has to be done from what we currently have. We want you to be a partner in informing priorities, in helping to shape, redesign and evaluate services. We are committed to facilitating your voice to be heard. We commend this initiative and look forward to the outcome of the project. “ The next step is for the Youth Network to find its feet and its own voice to help guide the direction of a conceptual youth service. To this

7

HD Buzz Shorts The following short 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.

Mitochondria and oxidative stress

http://en.hdbuzz.net/107 All cells in the body require energy to work and produce it by converting types of food into energy using a process known as ‘metabolism’. Tiny structures called mitochondria, which are like miniature cells inside our cells, produce the vast majority of energy used by each cell but also produce a lot of stressful molecules called reactive oxygen species in the process. Many years of evidence suggest that excessive oxidative damage is occurring in cells and tissues from HD patients, suggesting to some scientists that reducing oxidative damage using chemicals called anti-oxidants might be helpful in HD. Lots of research is exploring this potential.

The Immune System in HD http://en.hdbuzz.net/108

‘Guard dog’ proteins reveal surprising connections between Huntington’s disease and other brain disorders http://en.hdbuzz.net/111

to the ears of HD family members everywhere. But does the science live up to the hype? The short answer, sadly, is no.

HDBuzz Special Feature: Huntington’s disease and sleep http://en.hdbuzz.net/115

DNA/RNA-binding proteins, a fancy type of protein that ‘guards’ the genetic instructions running brain cells, are known to be important in diseases like Alzheimer’s and motor neuron disease. New research suggests that these proteins could be key players–and lead to new treatment options–in Huntington’s disease as well.

Prana Biotech publishes Huntington’s disease animal model data for PBT2 http://en.hdbuzz.net/112

The Huntington Study Group and Prana Biotechnology are currently running a clinical trial in human HD patients in the USA and Australia, called Reach2HD, to determine whether the drug PBT2 is effective in HD patients. Now, they’ve released the preclinical data behind the trial, showing the drug is effective in two animal models of HD.

Gone fishing: protein network screen identifies new therapeutic targets in HD

Many Huntington’s disease patients have problems with sleep and in the control of daily or ‘circadian’ rhythms. These problems may actually be part of the range of symptoms in HD, and managing or treating them directly may be beneficial. In this special HDBuzz feature, sleep expert Prof Jenny Morton looks at the science behind sleep problems and solutions in Huntington’s disease.

*** Simple rules for a good night’s sleep in Huntington’s disease

Dyeing to prevent dying? http://en.hdbuzz.net/110

One of the hallmarks of Huntington’s disease is the formation of protein clumps in brain cells. It’s not clear whether these protein clumps cause disease, but treatment with a blue dye called ‘methylene blue’ which disrupts the clumps has now been shown to delay symptom onset in an HD mouse model.

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The mutant huntingtin protein doesn’t do damage in isolation–all proteins work in connected networks. Researchers at the California Buck Institute for Research on Aging have conducted a large-scale screen to identify protein networks that may be acting to relieve or worsen the harmful effects of the Huntington’s disease mutation. Could manipulating these networks offer new therapeutic options for HD?

The University of New Orleans has NOT discovered a cure for Huntington’s disease http://en.hdbuzz.net/114

A recent press release from the University of New Orleans (UNO) claims its researchers have discovered a “way to delay symptoms of deadly Huntington’s disease”. This, of course, is music

No surprises in published results from HART study of Huntexil for Huntington’s disease http://en.hdbuzz.net/118

A new paper in the journal Movement Disorders reports the findings of the HART study of pridopidine, also known as Huntexil–a new drug aimed at improving movements in people with Huntington’s disease. Unfortunately this publication doesn’t change much–a new, larger trial is still needed before we will know whether Huntexil works.

http://en.hdbuzz.net/120

In part two of our special feature on sleep problems in Huntington’s disease, we bring you Prof Morton’s ‘simple rules for a good night’s sleep’, distilled from her comprehensive review of sleep research in Huntington’s disease.

The ‘N17’ region of huntingtin protein: an address label in Huntington’s disease? http://en.hdbuzz.net/116

http://en.hdbuzz.net/113 The immune system is thought to behave abnormally in Huntington’s disease. Now, in testing on HD mice, a new drug has been shown to improve symptoms and survival– with interesting implications for the immune system as a target for HD therapies. It’s worth remembering though, that other drugs that have worked in mice haven’t always been successful when tested in humans, because no animal is a perfect model of Huntington’s disease.

New evidence reveals that Huntington’s Disease mutation carriers have differences in liver function, even before they have symptoms of HD. This new finding might help us understand the metabolic changes experienced by HD patients, which are currently poorly understood and under-studied.

New research is helping understand how the mutant huntingtin protein moves around the cell. Discovering where huntingtin ends up, and why, could help us understand HD. Now, Canadian researchers have shown that a small piece of the huntingtin protein behaves like an ‘address label’ for the whole protein. By studying this label and how it affects Huntington’s disease symptoms, we may be able to better understand what goes wrong in HD and hopefully generate a disease-modifying therapy.

Liver changes in Huntington’s disease patients suggest more ‘whole body’ research needed http://en.hdbuzz.net/117 Huntington’s disease patients seem to have a lot of changes outside the brain, but these issues haven’t yet been studied in great detail.

The Huntington’s disease gene, twenty years on 2013 is the twentieth anniversary of the identification of the gene that causes Huntington’s disease. This discovery in 1993 paved the way for our current–and ever-growing– knowledge of the gene’s harmful effects in the brain, and how we might target them for therapy. Is a new technique set to revolutionize Huntington’s disease genetic testing? http://en.hdbuzz.net/119 Genetic testing offers at-risk people the option of knowing for sure whether they carry the gene that causes Huntington’s disease. For a tiny minority of people, the basic test needs to be followed up with more detailed analysis before a result can be given. Now a new technique may bring quicker results for those people. The new method is a small but important improvement that doesn’t change any existing test results.

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