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Get involved in research 63 marathons in 63 days 10 top tips for Winter 2017 carers

Great grandma has a head for heights

Blood test breakthrough Black days to black belts TV, tattoos and making every day matter Elysium Neurological provides specialist care and rehabilitation for people with Welcome neurological conditions, acquired brain In this edition injuries and spinal cord injuries. 6 Research news 10 TV, tattoos and making every moment matter

16 Inherent: A Huntington’s disease story From Andrew Bickerdike, 18 Black days to black belts: how Chair of Trustees and kickboxing helps Matt with Cath Stanley, Chief Executive Huntington’s

20 Inspirational fundraising volunteers It’s hard to believe that winter is upon us and honoured with awards another year has flown by. We’ve continued our focus on supporting people living with Huntington’s 22 63 marathons in 63 days and their families, through visiting people in their homes, providing information, and sharing advice 25 Upcoming events online and over the phone. With an increasing 28 Spotlight on…Newcastle branch emphasis on the digital world we’re looking at how we can develop that side of our support. We 30 Top 10 tips for carers launched our new website in October, which we hope will provide useful support and information. We’ll be updating the site over the coming months and plan to add new resources and functionality. Contact us From our four specialist centres Elysium Neurological We’ve made progress on a new scheme of accreditation for nursing homes – thank you to provides the specialised care and expert therapeutic 0151 331 5444 everyone who has participated in the consultation interventions required for people affected by the www.hda.org.uk majority of known neurological conditions including process. Read about the scheme on page 13. [email protected] Huntington’s Disease. @HDA_tweeting New data protection laws come into effect in May Located in Bosbury near Hereford, Stanley House @hdauk 2018. This may change the way we keep in touch is dedicated to providing a home from home for all with you. You’ll be hearing more from us in the next its residents. Badby Park located in Daventry near Suite 24 Liverpool Science Park IC1 few months about how you can keep up to date 131 Mount Pleasant, Liverpool L3 5TF Northampton is set within rolling parkland and like with news from the Huntington’s community when Registered charity no. 296453 it’s sister service in Stoke on Trent, Adderley Green; these changes happen. offers a full inter disciplinary team to support and Our services provide long term complex care and respite For advice or support from one of our We’ve packed this edition with updates on research enable residents to undergo reviews of their specific for those adults who require specialist care to meet their Specialist HD Advisers visit: into Huntington’s, including how you can get and/or changing needs. The Bridge in Middlesbrough complex physical and psychological impairments. www.hda.org.uk/supportnearyou will open in late autumn 2017. involved. You can also read inspirational stories You’ll notice we look a bit different to our previous about people living well with Huntington’s, raising publications. We’ve started work to develop and awareness on TV and in the community, insights modernise the look and feel of the Huntington’s for carers and successes from some of our fantastic Disease Association. By doing this we’re aiming to fundraisers. connect better with the people we support and to For more information about any of the services or care reach new audiences. Keep a look out for more to We’re incredibly privileged to have so many pathways Elysium Neurological can provide please contact: come! volunteers who tirelessly raise funds and awareness, run branches and support groups and offer a Rachael Chamberlain on 07387 108625 The views expressed in this publication do not listening ear to others. Your help is invaluable – necessarily reflect those of the Huntington’s Disease thank you for all you do. or [email protected] Association (HDA). The advertisement of third party Confidential information should be emailed to: products or services does not imply endorsement from [email protected] the HDA. Thank you

1157 HDA advertorial AW.indd 1 08.10.2017 16:07:49 RESEARCH ARTICLE HEAD

Blood test can predict onset and track progression of Huntington’s disease

The first blood test that samples from the TRACK-HD onset, progression and the rate of can predict the onset and study, an international project brain shrinkage as measured by progression of Huntington’s that followed 366 volunteers for MRI scans. disease has been identified in three years. a study led by researchers at Currently, the best biomarkers University College London. They found that levels of the available are measured with brain protein were increased neuroimaging or cerebrospinal The researchers say their findings throughout the course of HD fluid, which are more difficult and should help test new treatments – even in carriers of the HD expensive than a blood test. The for the genetic brain disorder. gene who were many years researchers say that predicting Dr Edward Wild from showing symptoms of progression in people with the “This is the first time a potential the disease. People with the Huntington’s gene who do not blood biomarker has been HD gene had neurofilament yet show symptoms has been could help us figure out whether identified to track Huntington’s concentrations that were 2.6 particularly challenging. those brakes are working.” disease so strongly”, said senior times more than the participants “We have been trying to researcher Dr Edward Wild. who didn’t have the gene, and “We have been trying to identify However, the researchers caution the level rose throughout the blood biomarkers to help track that the test is not expected identify blood biomarkers The test measures the course of the disease. the progression of HD for well to be immediately helpful for neurofilament light chain over a decade, and this is the best individual patients. “This is the to help track the (neurofilament), a protein In the group who had no candidate that we have seen so first time neurofilament has released from damaged brain symptoms at the start of the far,” said Dr Wild. been measured in blood, so progression of HD for well cells, which has been linked to study, the level of neurofilament much more work is needed to other neurodegenerative diseases predicted the onset of the “Neurofilament has the potential understand the potential and but hasn’t been studied in the disease, as those with high to serve as a speedometer in limitations of this test,” said over a decade, and this is blood of Huntington’s disease neurofilament levels in the blood Huntington’s disease, since a Lauren Byrne, the study’s first patients before. at the start were more likely single blood test reflects how author. “In the future, if drugs the best candidate that we to develop symptoms in the quickly the brain is changing. to slow HD become available, The team, led by scientists at UCL following three years. After taking That could be very helpful right it may well be used to guide have seen so far.” Huntington’s Disease Centre, into account factors already now as we are testing a new treatment decisions. For now, this working with colleagues in known to predict progression – generation of so-called ‘gene test is most promising as a much Sweden, the USA, Canada, France age and a genetic marker – the silencing’ drugs that we hope will needed tool to help us design and the Netherlands, measured blood level of neurofilament was put the brakes on the condition. and run clinical trials of new neurofilament levels in blood still able to independently predict Measuring neurofilament levels drugs.”

4 5 RESEARCH RESEARCH Get involved with Huntington’s

Enroll-HD is a clinical research platform that includes a research worldwide observational study for Huntington’s disease families.

The study is a global project to develop new drugs, better designed to improve ways to test whether the drugs understanding of Huntington’s will be effective, and helps drug and to enable faster, smarter companies set up trials more and better clinical trials. Since quickly. the study started in 2012, over Scientists around the world 15,000 people in 15 countries In the UK, there are 28 study are researching ways to slow have signed up and the study centres across England, Wales down or prevent Huntington’s continues to grow. and Scotland actively recruiting disease. There are also teams new participants. Taking part in investigating new treatments Enroll-HD has generated the the study means visiting one of to help with the symptoms. world’s largest database for these centres once a year. The Getting involved in research Huntington’s clinical research Huntington’s disease specialist is a great way to help people – a hugely important resource team at the centre will do some with Huntington’s disease for researchers to learn more tests of movement, thinking and now and in the future – and Research participant Nick having an about the disease. The database mood, and will ask for a small you don’t always need to have MRI scan. An MRI scanner contains a includes information from a blood sample. large magnet and can show detailed the Huntington’s gene to pictures of the brain. The researcher, wide range of participants from contribute. Eli, explains the scan to Nick before he around the world who are at If you’d like to take part, you lies down flat on the bed and his head different stages of the disease. can find your nearest Enroll- is placed inside the magnetic ring. Here you can find out This allows researchers to gain HD study centre and more more about two important a better understanding of why information about the study, studies that are looking for and when certain signs and at www.enroll-hd.org participants right now. symptoms appear.

While Enroll-HD doesn’t involve testing any potential drugs or time when future therapeutic complete, the researchers will other therapies directly, it aims treatments can be given analyse the data and aim to to speed up research into new 5 to prevent it. The study will publish the results of the study effective treatments. It helps years include 120 young adults in spring 2020. researchers identify new ideas between the ages of 18-40. Half of this group will be The researchers are still looking people who carry the gene for people to take part until and the other half will be December 2018. The team A research team at University people who don’t carry the arrange the visit to London countries15 College London, led by gene. The research team at University and provide a hotel, travel Professor Sarah Tabrizi, have College London and expenses. Participants begun a new research project The study opened in August are welcome to bring a friend, called the Huntington’s 2017 and so far 22 young people partner or family member for 15,000+ Disease Young Adult Study from around the country have people remember and process company. (HD-YAS). travelled to London to take part. information, having blood taken participants The visit lasts up to a day and a and answering questionnaires If you’re aged 18-40 and The study aims to identify the half and involves having an MRI about symptoms such as anxiety would like to know more about earliest point at which changes brain scan, playing computer and depression. There’s also an how you can take part, please related to Huntington’s can be based tasks and games to option to donate cerebrospinal email [email protected] found, and therefore the earliest help understand the way fluid (CSF). When the study is or call 0203 108 7539.

6 7 RESEARCH RESEARCH

“We are very excited about working more closely with the Huntington’s Disease Association on a project we feel very Investing in passionately about. The grant will allow us to look in great Huntington’s detail at the factors related to changes in financial decision making in Huntington’s research and also at how many Research into Huntington’s Huntington’s patients and Encouraging people to get active through is happening across the families have been affected specialist Huntington’s disease clinics world, with scientists by financial abuse in the UK. This grant will allow us to do exploring all aspects Cardiff University what motivates us the most – of the disease to find research aimed at improving Over the last ten years, more and more research studies have effective treatments and the everyday lives of our shown that exercise is safe and beneficial for people with the ultimate aim of a cure. patients.” Huntington’s disease. But research also shows that physical activity While their inspiring effort Professor Roger Barker, levels of people with Huntington’s remain low. So it would appear continues to give hope University of Cambridge that there are challenges to this research being used within clinical for people in the future, practice. There’s also evidence that healthcare professionals such it’s important to consider as doctors and physiotherapists don’t encourage people to get people with Huntington’s acting get an accurate understanding of more active. ways to improve life for Understanding impulsively and making quick, how people manage their money, people with Huntington’s financial decision ill informed decisions. It can also their perception of financial This research project, led by Dr Una Jones, aims to explore the in the here and now. making in mean they have difficulty working abuse and their experience of challenges of applying the recommendations from the previous We’re supporting projects out the risks in situations and financial mismanagement. research in the clinics, and to help clinic staff to develop plans to can struggle to handle multiple promote physical activity with their Huntington’s patients. that can help make a Huntington’s pieces of information, making it By working with participants at difference for people disease hard to solve complex problems. different stages of the disease An important part of the project is to get the perspectives of living with Huntington’s. University of Cambridge the team will identify the things healthcare staff, and importantly to hear from people with The projects have been Research has shown that that influence how people with Huntington’s and their carers. The researchers will bring both reviewed by the HDA’s problems at work are one of Huntington’s make decisions groups together, giving them the opportunity to discuss how medical advisory panel, The way we deal with money has the first noticeable difficulties about their money. This will give physical activity could be promoted within specialist Huntington’s a group of Huntington’s changed in recent years, with in Huntington’s disease, closely the team an insight into the areas clinics. The discussions will be summarised and sent to everyone disease scientific experts, internet banking, phone sales followed by problems with making Huntington’s patients who takes part, giving clinic staff the information they need and our HD Voice research and pin numbers becoming the managing their finances without particularly vulnerable to financial to adapt their practice to promote physical activity with their norm. This has left many people support. abuse. patients. panel, a group of people at risk of financial abuse, such from our community who as theft, fraud and exploitation. Professor Roger Barker and his The team will also test a group The researchers will follow up with the clinics six and 12 months have direct experience of People with Huntington’s disease research team at the University of people with the Huntington’s afterwards to find out what changes have taken place and any Huntington’s disease. are particularly vulnerable. of Cambridge will investigate gene who are on the cusp of benefits there have been for their patients. The results will be financial abuse by looking at being diagnosed, and repeat shared with the Huntington’s community so that as many Huntington’s is associated with the experiences of people with it two years later. This may people as possible can learn from their findings. a loss of connections in the Huntington’s disease, their help to identify changes brain that link critical areas families, carers and support that could predict future “The funding from the HDA means that we can work deep within it to the thinking workers, to see how much of a financial vulnerability. towards implementing the findings from large research parts at the front. When these problem financial abuse is in studies in the real lives of people with Huntington’s circuits breakdown it can lead Huntington’s disease. disease. We know that exercise is safe and beneficial – to problems with thinking and we now need to work out how people with Huntington’s changes in behaviours. These Through interviews and cognitive disease can integrate physical activity into their daily lives.” changes can often lead to assessments, the scientists aim to Dr Una Jones, Cardiff University

8 9 FEATURE ARTICLE HEAD TV, tattoos and making every “The Huntington’s Disease Association has not seen the last moment matter: of me – there’s so much more I want how Huntington’s to do.” has changed me

Harry-Jon’s tribute tattoo was inked by celebrity tattoo artist Jay Hutton (top), Harry-Jon’s family knew nothing Ellie-Mae passed away later in he explains, “a tattoo of a photo based on his favourite photo with his of Huntington’s when his younger 2014 aged just 16. “My biggest of the two of us as toddlers on sister (left) sister Ellie-Mae developed regret,” says Harry-Jon, “is that swings, me looking down on symptoms in 2011. She had I wasn’t able to spend more her. It said so much about our always had difficulties and was time with her. It’s hard for young relationship.” The programme for the crew, who he says were Huntington’s, to a new, younger thought to be on the ADHD and people these days – you have makers agreed and soon he was very moved by what they heard, audience. autistic spectrums, but then her academic pressures, decisions travelling to London to record the particularly the genetic nature mobility became affected. She to make. But when something programme. of Huntington’s and how it “I love my tattoo but most of all Twenty-two-year-old Harry-Jon was diagnosed with Juvenile like this comes into your life, you affects generations of families. I’m proud of the awareness I have Morgan is fit, healthy, self- Huntington’s disease in 2012. “It change. There’s a sort of collateral The incredible life-like image was Harry-Jon’s grandad died from been able to raise,” says Harry- assured and full of life, but he took a long time to get to grips beauty that comes out of it – from tattooed on his arm and Harry- the disease eight months after Jon. “I’m so happy I did it. I would admits there have been ‘dark, with what it was,” says Harry-Jon. something so terrible, you get Jon has nothing but admiration Ellie-Mae, and his father has since say to anyone who is considering dark days’. Currently a student “Eventually we realised it was in something good. I had started been diagnosed with it. whether to go for something, just in sports coaching at Leeds our family and that our grandad letting myself go but I changed do it. Ellie-Mae is the reason and Beckett University, Harry-Jon had it.” my lifestyle. I started playing The public reaction to the she keeps me going, even now. has a take on life that’s mature rugby regularly again, I started broadcast was huge. A segment She fought with such dignity and beyond his years. As well as Harry-Jon and Ellie-Mae were smiling at people and I didn’t from the episode featuring grace and she inspired us all.” studying, he plays rugby at a extremely close, part of a large even realise I was doing it. I knew Harry-Jon shared on Facebook highly-competitive level, has a family of six siblings with mum my sister would want me to live has attracted 7.6 million views to part-time job helping children Samantha and stepdad Richard. every day, not to waste it.” date, with over 90,000 likes and with disabilities and talks about Seeing his sister go through the almost 30,000 shares. Harry-Jon’s the need to make every day disease was, at times, unbearable. Sometime later, he hit on an local paper covered the story and count. This year he achieved his “She really was amazing, though,” idea. Having seen an episode he was inundated with messages, ambition to appear on national he says, “She coped with so of the popular TV show Tattoo not just from friends but from To watch the television. Much, if not all of this, much. But my mum was the real Fixers (where people get tattoos well-wishers, as well as others Tattoo Fixers he puts down to Huntington’s hero in all this, because she was transformed or created), he got whose families were affected episode featuring disease - in particular, Juvenile her full-time carer.” in touch and told them his story. by Huntington’s. The show was Above: Harry-Jon and Ellie-Mae were Harry-Jon, go to: Huntington’s disease. “I knew exactly what I wanted,” getting the message out about very close bit.ly/2AQuyMg

10 11 NEWS

Remember someone special this Christmas Take a look at our new website at www.hda.org.uk

Dedicate a festive light on our online Christmas tree in memory of someone dear. You can honour their life while helping others at the same time. To dedicate a light to a loved one and leave a special message of remembrance visit: www.hda.org.uk/remembersomeonespecial

Momentum building for new care home accreditation scheme

We understand that moving Over the past few months, we’ve providers to participate. In Have you seen our to residential care is one of met people up and down the October we hosted a workshop the most difficult decisions country who’ve shared their for providers to learn more a person with Huntington’s experiences to help develop about the accreditation scheme and their family may make. the scheme, while others have and how it could benefit new website? We’ve heard from many shared their views in an online them to take part. Over 40 people who have been questionnaire and over the delegates from more than 20 We’ve added lots of useful through this, who would phone. Their feedback has given care homes attended, and it information to help HD Voice Reader Panel have found it helpful to know us unique insights into what is was clear that they would like improve understanding of A group of volunteers with lived experience of beforehand whether a care important to families, and will to seek formal recognition Huntington’s disease and Huntington’s disease reviewed the information home can cater for their help form the care standards for providing specialist care. throughout our new website, bringing their unique help you get better care. loved one’s specific needs. care homes will need to meet. They also thought they would perspectives and offering useful suggestions. We’ve given it a fresh new These standards will be assessed benefit from the chance look and made it easier to Do you have experience of Huntington’s disease? You We’ve begun a project to improve through the scheme, and care to share good practice and navigate. could join our volunteer Reader Panel to help us learn standards at care homes that homes will receive accreditation learning. Cath Stanley, Chief more about the types of information that is useful for specialise in caring for residents when they achieve the necessary Executive, commented: “It was We’ve got some exciting people living with Huntington’s and their families. with Huntington’s. We’re aiming criteria. encouraging to see so many new features in the To find out how you can get involved please get in to build an accreditation scheme providers at the event. Their pipeline so keep checking touch with Ruth Abuzaid by email: to give families confidence when Importantly, we’ve also enthusiasm for the project was back to see what’s new! [email protected] or phone: 0208 446 9879 choosing a home. encouraged care home exciting to hear.”

12 13 NEWS

BBC Children in Need awards grant to expand specialist youth service A generous grant of £116,000 over three years from BBC Children in Need will extend our specialist youth service for children and young people growing up in families affected by Huntington’s disease.

The grant will help fund a new Specialist together will give more children and Youth Worker, alongside new activities young people the opportunity to speak to bring children and young people to someone who understands the affected by Huntington’s together to difficulties they may be facing.” share their experiences and support each other. Ruth Abuzaid, Deputy Head of Advisory Service said: “We look forward specialised neurological care We’re delighted that Neil Holman (top to analysing and expanding the youth right) has joined us to develop the service service by looking at the information in the south of England and South Wales, we provide for young people and the made possible by the Children in Need opportunities we give them to get grant. He is joined by new Specialist together, both virtually and physically.” Youth Worker James O’Connor (bottom right), who takes over from Adam Cho, James and Neil will continue to who will work with children and young offer ongoing one-to-one support people in the north of England and and will start working with children North Wales. and families in January 2018. In the meantime, if you or a young person you Kate Davis, Head of Fundraising, said: know have any queries, or need help or PJ Care is a leading provider of specialist Our residents’ care is at the heart of “We’re incredibly grateful to Children in Need. advice, please call 0151 331 5444 or email info@ neurological care and neuro rehabilitaion everything we do. We strive to nurture Their mission of improving the lives of children hda.org.uk to be put in touch with your local for people with progressive or acquired dignity, independence and privacy through across the UK fits well with our plans to extend Specialist Huntington’s Disease Adviser. neurological conditions. our purpose-built facilities, our highly our youth services. Having Neil and James working trained multi-disciplinary teams, the care models we offer and the therapies and activities we provide. Grand Prize Draw You could We have three specialist neurological care Friday 2 February 2018 win £1000! centres in Milton Keynes and Peterborough. What a great way To find out more, please call us on: Tickets cost just £1 each and every ticket you buy will help to start 2018 us to support families affected by Huntington’s disease. To enter the draw, return your tickets to Head Office by 26 January 2018 All winners will be notified in writing. A full list of winners will be available on our website from Monday 5 February 2018. For more information or to request more tickets please email [email protected] or call 0151 331 5444.

1st prize 2nd prize 3rd prize £1000 £500 £250 cash cash cash Let our family take care of yours. 15 AWARENESS FEATURE

We’ve teamed up with award winning social documentary photographer Stephen King to create an awareness exhibition, giving our contributors Inherent: the chance to tell their own story and curate their own entry in the exhibition through words and pictures. a Huntington’s Sponsored by disease story The Lucking family’s

story petrified of passing it on to the kids, and that was my main “You have a concern with doing the test. I found that really traumatic. I felt moment in your Shelagh: Our dad had really guilty. That was my focus Huntington’s disease. for a long time before they went life which could He was one of 15. We and had their own tests. sort of knew something was in last for 15 the family but we didn’t know Amy: It was about six years anything about it until our dad between when I found out minutes, but was diagnosed in his sixties. I about mum, and having my own looked into it a bit more because test. I didn’t see the purpose in could change I had three children, so I wanted going and finding out before to have the tests pretty quickly. then. I’m not like mum, I don’t everything.” I’m a need-to-know person. see the point in dealing with that amount of detail. It was Helen: Once I’d decided to have only when I was 22 and in a the blood test I just wanted to relationship and was going to be find out. You have to go through thinking about having children counselling. They have to do that that it came into my life. and it’s a benefit to some, to happy for you.” It’s hard to know them as well, to find out whether Ruth: When I had my test I was what to feel in that situation. you can cope with it. But at the in shock. I had the test, and then time you just want to know. I they lost the results and I had to Amy: As you walk in to get the wanted to set my life out and do have it redone. The nurse didn’t results, you have a moment in different things if I was [gene] even wait for me to get in the your life which could last for positive – which I was and I have. room. She saw me pull my car 15 minutes, but could entirely up and she came running out. “I change everything. And that’s Shelagh: I was [gene] positive couldn’t wait, I couldn’t wait, I’ve when it hits – when you walk Left to right: Shelagh Lucking, too. I was really scared for the been waiting for you to get here through the door to get the Helen McDermott, Amy Whittle and Ruth Lucking kids. Not really so for me. I was all morning. You’re clear, I’m so results.

16 17 LIVING WITH ARTICLE HEAD HUNTINGTON’S “My kickboxing club

fun to do as a family. Then, Despite doing all they can to were amazing. They having progressed well, Marie stay well, “Life is hard,” admits really got how this sustained a bad injury and Matt’s Matt. “Getting out of bed each Huntington’s symptoms started morning is a battle that needs to could help me and to develop. They took a break be won every day. But Marie tells of around two to three years, me I’m the bravest, strongest what I needed to make during which Matt admits, “I’d man she knows, because I’m become very unsure of myself. constantly fighting so many it happen. They were I was worried about falling over internal battles which HD throws supportive from the and suffering with insomnia. But I at me.” He explains that for saw a sleep consultant, had some him, it’s all about trying to value very beginning.” cognitive behaviour therapy and himself, about reclaiming what eventually realised that getting Huntington’s takes away. “I’m back into kickboxing could really doing this as Matt Ward. Not HD help me.” Matt,” he says.

Matt had read about clinical studies that suggested people with Huntington’s, Parkinson’s, brain injuries and other Black days to black belts: neurological problems may benefit from martial arts; that How kickboxing helps a mix of balance, strength, focus and co-ordinated moves can improve symptoms across Matt with Huntington’s mind and body. His kickboxing instructors noticed that while he entered the class using a walking stick, he was often able to leave without using it. “They also Matt’s top 5 appreciated I needed to make tips for progress, to get through the living well belts.” says Matt. “So, they slowed Depression is very Forty-three-year-old Matt Ward in his family and was hoping everything he could about things down for me and adapted 4 common – we all go has a black belt in kickboxing. for a child of his own, when his Huntington’s, and he had a head the grading process. For example, through peaks and troughs. He also has Huntington’s father dropped the bombshell start. He explains, “Coincidently I have problems with memory I try to do things that will disease. Achieving this level in that his grandfather had died of I’d studied HD whilst completing and getting fatigued, so they Every day I try to do some help give me a more positive a martial art while battling the the disease and they suspected a molecular genetics degree. divided what should have been 1 physical activity such as outlook. effects of the illness has not his mum had inherited it. Any My first job after graduating was a whole day of testing into three the gym or kickboxing as it has been easy, but Matt’s pretty child, would be at risk. It was a in a medical school lab, but I’d chunks.” such positive effects on my Research has had a very convinced he would not be as devastating shock. By the time changed direction and got into mood and lifts my cognitive 5 meaningful impact on well as he has been, without Matt met his second wife Marie, IT.” This knowledge, he explains, Last year, Matt won his club’s fog. I try to stay fit, physically, my life. By contributing and it. “Huntington’s takes so who had two children, he had helped him to understand not ‘most inspirational student’ mentally, emotionally. helping to find a cure – for me, much away from you,” he says, taken the test and knew he had just the mechanics of why he was trophy and in March of this year, that’s fighting against it. I’ve felt “and this not only has real the Huntington’s gene. getting ill, but also the emerging Matt and Marie both achieved I prioritise my life in touch with the leading edge neurological benefits, it’s a research. As a result, participating their goal of attaining black belts. 2 differently, and spend of the science. Huntington’s is way of me fighting back. Of me “I think because things were less in clinical trials has always been more time with my family. rare but the technologies being being me.” hopeful when I was a child, and important to Matt and Marie, Matt is now, health permitting, developed will help not just so much less was understood, and they began getting involved working towards his second I try not to put things off. HD patients but people with In 2002, Matt was married and my parents put their heads straight away. Dan (the next grade above 3 If you know you might not many other neuro-degenerative living in London with a successful in the sand. It was sort of out the first blackbelt) and he and make retirement age, it makes conditions. Terrible as the career in IT when his life changed of sight, out of mind,” he says. Keen on all kinds of sports, Marie teach ‘Little Dragons’, a sense to do things sooner rather disease is, it’s uplifting to be a forever. He didn’t know the Matt, however, took a different in 2009 the couple took up kickboxing class for children than later. part of this. faulty Huntington’s gene was approach. He wanted to learn kickboxing as something aged four to eight years.

18 19 FUNDRAISING ARTICLEFUNDRAISING HEAD

Inspirational fundraising volunteers honoured with awards

Great grandma’s

Young Volunteer of the Most Inspiring Volunteers Margaret Cairney (above) and Mary Friend of the HDA Les Year Henry Vervoorts Wormleighton (above right) with Cath Stanley, Chief Executive Shan with Cath Stanley, head for heights with Cath Stanley, Chief Executive Chief Executive, and Charles Sabine helps the HDA

We were delighted to celebrate Nottingham. While Margaret Huge thanks to all the winners, Daredevil Shirley McConnell the fantastic achievements Cairney from Nottingham nominees and each and every showed you’re never too old for of our dedicated fundraising and Mary Wormleighton from person who raises funds and an adventure after taking on a volunteers at our second Northamptonshire were awarded awareness of Huntington’s tandem skydive to raise funds for Fundraising Volunteer Awards the Most Inspiring Volunteers. disease. We couldn’t do what we the HDA. Ceremony. do without you. Winner Mary Wormleighton The 82-year-old great grandma Joining us at the Adelphi Hotel said: “I was thrilled to bits. There Thank you to headline sponsor from Stockport, Greater in Liverpool, as compère for is no way I could have done Exemplar Healthcare, and award Manchester, jumped out of a the evening, was Huntington’s it without the support of my sponsors Nutricia and Diligence plane at 11,000 feet with her disease ambassador Charles friends and family. It was a really for making this event possible. grandson Alex McConnell and Sabine, who congratulated each special night. The evening was a his fiancée Tara Goldsmith. nominee for their wonderful humbling experience as everyone The trio chose to raise money contribution to the HDA and in the room works so hard.” for the Huntington’s Disease shared his own experiences of Shirley, Alex and Tara prepare Association as Tara’s family is for their jump raising awareness. Margaret Cairney said: “There are affected by Huntington’s. such great volunteers out there, always wanted to have a go but There were a staggering 17 I am just one of many. With or Alex said: “Tara’s father Roy not had the chance until now. nominees for just two available without an award, I enjoy every sadly passed away as a result I’ve always liked flying and I Has Shirley inspired awards in the Most Inspiring minute of raising awareness and of Huntington’s disease. Tara wanted to do it before I got too you to take on your Volunteer category, and six fundraising.” decided to take the genetic test old. own challenge? nominees in the new category of several years ago and learned Find ideas, inspiration Young Volunteer of the Year, with To complete the evening’s that she will also eventually “My friend did one and said it and information for the winners chosen by public honours, a special discretionary develop Huntington’s.” goes by so quickly you want to fundraising at vote. award, Friend of the HDA, was do it again, which sounded good. presented to volunteer Les Shan The thrill seeking trio took to The thought that a nice young www.hda.org.uk/ The Young Volunteer of the for helping the HDA with his the skies above Lancaster for man was safely holding me was fundraising Year award was won by 14 professional IT experience for the parachute jump and raised reassuring too. You are never too year old Henry Vervoorts from many years. nearly £2000. Shirley said: “I’d old.”

20 21 FUNDRAISING FUNDRAISING

Little Print Shop of Horrors reopens for Huntington’s disease awareness

A team of designers at Manchester-based branding agency Creative Spark have flexed their artistic muscles to raise funds for the Huntington’s Disease Association. Writer uses Little Print Shop of Horrors is an 63 marathons literary talent annual charity design challenge to raise funds where the team pick a ghoulish theme and design unique posters in 63 days Author and poet Bruce Harris which are sold to raise funds has published two books in aid for charity. This year’s theme is for inspirational of the Huntington’s Disease ‘Netflix and Kill’, with illustrators Association, after his long term choosing an iconic TV series to partner was diagnosed with reinvent with a creepy Halloween shows, including Stranger Things, fundraiser Nikki Love the illness in October 2016. twist. Peaky Blinders and Mad Men.

Photos courtesy of the Nottingham Post One poster, featuring Royle An intrepid athlete from days. I told him if I ever did Odds Against, a book of 15 Each year the team donates Family star Ricky Tomlinson, Leicester has completed her anything crazy again it would award-winning short stories, all proceeds to a charity (pictured above) made a big attempt to run 63 marathons in be for the Huntington’s Disease explores the theme of close to their hearts. Business impression on the actor, who 63 days in aid of the HDA – and Association, and I have kept my overcoming problems, with Development Director Claire signed one of the limited edition hopes to have her achievement promise. the characters tackling various Critcher explains why they chose prints to be auctioned online. recognised as a world record. problems in different ways. The the HDA: “20 years ago my wife, “I can see the changes he’s going book is supported by a group Nicola, found out that her mum, Nikki Love, a 50-year-old physical through. By supporting the HDA of writers including million- Lynne, had been diagnosed trainer, started her challenge I’ve been able to raise awareness selling novelist Joanne Harris, with Huntington’s disease – a at John O’ Groats on 27 August and funds for the charity, as I who began her career writing condition that had been part of which took her across the UK, know they are there to help him short stories. their family for generations but down to Land’s End, and back and his family.” had skipped four other siblings up to finish in Leicestershire’s His second book, titled and found to have been inherited Swithland Wood on 28 October. Rather than running in a straight Kaleidoscope, includes 50 only by Lynne. Because of this, Over nine weeks, Nikki covered line from John O’ Groats to poems celebrating human Nicola faced the same decision a staggering 1650 miles – the Land’s End, Nikki zig-zagged diversity in a variety of patterns as her mum all those years ago, Nikki Love ran part of her challenge equivalent of running the length with friend Dirk Vervoorts across the UK to visit all the and verse forms. and made the choice to take the of Britain’s longest motorway, the places she wanted to see, predictive genetic test that has M6, seven times! including Aviemore, St David’s, Bruce said: “As I no longer have been likened to the ‘flip of a coin’. the Brecons, Brighton and the youth and fitness to go in Nikki is hoping her achievement As well as attempting the world London. for marathons or swims, I have “We are now almost two years will be recognised as a world record, Nikki used the challenge set out to contribute to the on from receiving the news that record after having four tracking to raise funds for the HDA, Nikki received fantastic support work the HDA does in the best Nicola does not carry the faulty devices strapped to her on aiming for a target of £6300. along the way, with friends way available to me, which is gene and we are more involved every run to measure her time and well-wishers joining her at to dedicate to it the proceeds in supporting the HDA than ever. and distance. She has sent the Nikki’s motivation to support the different places to run part of from my writing. The books It’s made us more determined The new prints are on sale now, data to Guinness to be verified. HDA was close to home: “A good the route alongside her. “Dirk are aimed at making a direct to give time and energy back to alongside classic favourites Nikki said: “The world record friend of mine, Dirk Vervoorts, joined me on the Nottingham contribution to supporting the those whose coin fell on the flip from previous years. You can for consecutive marathons by was diagnosed with Huntington’s marathon and I expected him work of the HDA.” side.” browse and buy from the full a woman is currently at 60, so I ten years ago. Around the to only do a small part, but he selection of artwork at figured I’d simply round that up time Dirk was diagnosed, I stuck with it till the end. That was To find out how you can The exclusive series of 13 one-off www.littleprintshop to nine weeks and go for 63.” ran seven marathons in seven inspiring.” order your copies of designs are based on popular ofhorrors.com these special books visit harriscentral.org

22 23 F_BAR_15315 HDA advertorial – Huntington's disease.qxp_Layout 1 15/11/2017 16:00 Page 1

ADVERTISING FEATURE EVENTS

SPECIALIST CARE SERVICES: Upcoming events HUNTINGTON’S DISEASE Our events give people the chance to come together with others facing similar experiences to learn and share. Find With over 200 care homes and 7 hospitals, Barchester Healthcare is one of out about our upcoming events and how to book your the largest care providers in the UK and has over 20 years of experience. place at www.hda.org.uk/events or call 0151 331 5444. Barchester provides a wide range of specialist care services for those with complex needs and disorders, including Huntington’s Disease (known as HD).

The teams at Barchester truly understand the unique challenges and presentation of Huntington’s as a progressive disease. Should a time come when there is a wish, or need, to come into residential care for respite or longer-term care, we offer a range of care options to suit the needs of people with HD and their families.

ASSESSMENT LONG-TERM CARE Juvenile Huntington’s Disease Young Adults Weekend Certificated Course in An assessment stay allows our staff to assess and Longer-term care is offered to people who need Family Weekend Saturday 24 to Huntington’s Disease for monitor all aspects of well-being, while suggesting on-going specialist support and services to help Friday 1 June to Sunday 25 March 2018 Healthcare Professionals useful changes and strategies to help a person with them get the most out of life. As the person with Sunday 3 June 2018 Holiday Inn, Telford Courses in London and HD maximise their independence – helping them to HD journeys towards the final stages of the disease Calvert Trust, Keswick, Liverpool, dates TBC live their life, their way, for longer. we have the skills and expertise to help them through. Lake District RESPITE Our weekend for families living Our dedicated weekend for Our unique training course is with Juvenile Huntington’s young people gives those aged 18 an essential development event A respite break can give carers a well-earned rest Millaton Court – part of Kernow House Care whilst offering the person living with HD the disease (JHD) welcomes all the – 35 the chance to come together for healthcare professionals Centre in Launceston – is run by General Manager, family – the young person with to hear talks from Huntington’s involved in supporting patients opportunity to spend time with others experiencing Careen Harris (a HD Specialist and part of the HD JHD, parents, carers, brothers experts, get involved in with Huntington’s disease. It’s similar challenges. Regular time away from caring Association) and her team of highly skilled nurses, and sisters. The weekend gives workshops and meet others with your chance to meet fellow responsibilities enhances the quality of time spent carers and care practitioners. Their service meets families the chance to meet similar experiences. The weekend professionals, develop a deeper together, which can be invaluable in helping to the needs of individuals at different stages of the others in a similar situation, while welcomes people who are at risk understanding of the illness, maintain care given at home. We find many families disease and understand that life with HD is very also enjoying a great weekend full and not sure if they want to be share ideas and discuss the benefit from regular, planned respite stays that much a family affair. They work closely with the of exciting activities. tested for the Huntington’s gene, management of complex as well as those who have already situations. You’ll learn from enable the person with HD to become familiar with Regional HD Advisor whose role is to support a specialist care team and environment, something Children can take part in a range tested either positive or negative. Huntington’s disease experts and people and their families in the community with HD. of activities suitable for all ability Partners are welcome to come gain valuable insight to enhance they can rely on as their needs change. levels, including horse riding, along too. your practice. archery, canoeing, rock-climbing, sailing and swimming. It’s also a chance for parents and carers to To find your local Barchester care service, or for find out more about JHD from more information on specialist care services, visit: specialists in Huntington’s disease A date for your diary care and share experiences with other parents. There’s also Huntington’s Disease www.barchester.com/huntingtons a themed fancy dress party on Awareness Week Saturday night to give everyone 14 – 18 May 2018 the chance to relax and enjoy themselves with new friends. Keep an eye on our website in the spring to find out how you can get involved to raise awareness 24 25 of Huntington’s disease. EVENTS ARTICLE HEAD

A date for Reflections from your diary Family Weekend Cath Stanley, and AGM 2018 Chief Executive 12 – 14 October, Radisson Blu Hotel, “This year’s family weekend East Midlands Airport, saw a change in venue to the Derby Radisson Blu, East Midlands. The general agreement from families Family was that it was a good move, read and written by 15-year-old with situations and a research with much better facilities and Lauren Tuhill. On Saturday we update. Saturday night gave space. Friday night offered the heard from a variety of speakers the opportunity to walk the Weekend opportunity to meet old friends on topics including an update red carpet to our ‘night at the and also new, with lots of new on the work of the charity, movies’ themed evening. With families attending. Great hilarity some practical advice about a wide variety of workshops on 2017 was had with a play dough claiming benefits, a motivational Sunday, it was all too soon time quiz, and a very touching poem, speech about how to help deal to go home.”

Family weekend highlight Feeling isolated is one of the it’s like to live with Huntington’s. set up her own consultancy – and love pattern and habit and biggest challenges people Until I was 40, for most of my life eventually wrote her first book, sometimes they can be over with Huntington’s tell us about I had been either dealing with Your Life, Your Way. protective. regularly, so each year we Redefining the symptoms of the disease or bring people from across the visiting nursing homes. It’s so easy “And if I can do it anyone can,” Really think about 4 country together at our Family your story: to allow yourself to be defined by Paula told the conference. “I what brings you joy and Weekend and AGM. this terrible disease.” left school with virtually no happiness and do more of it. your life, your qualifications, never had a degree, Practicing gratitude for what The gathering gives people the Despite her family history, and felt like an imposter for most Paula’s we have rather than being sad chance to let their hair down in way Paula has never been tested for of my career. Who was I to write a 5 top tips about what we don’t naturally an environment where everyone Executive coach, therapist and Huntington’s and has no plans book?” for changing moves us into a more positive understands and meet others author Paula Meir has a passion to do so. She now runs a private your story frame of mind. Think of one facing similar experiences. for helping people to be the therapy practice in Norwich and Paula lives by her favourite quote thing every day you are grateful It’s packed full of information best they can possibly be. She London and insists that whatever by writer Joseph Campbell - You for! sessions, workshops and has over 20 years’ experience in the circumstance, people have have to be willing to let go of the presentations, with a chance to a global corporate environment the power to shift their thinking life you have planned, in order to It’s easy to focus on your If you ‘let go’ of what isn’t hear from Huntington’s disease as an HR Director and now and live a more fulfilling and receive the life that is waiting for 1 limitations and be defined 5 helping you or serving you, experts and plenty of time to consults independently. She happy life. you. by them – focus on what you you can make room for more chat with new friends. is also a master practitioner in can do and start opening up positive thoughts and actions. Neuro Linguistic Programming, She explained: “The biggest She combines this mantra with a possibilities. We can be limited by thoughts, For those who couldn’t make qualified executive coach and inhibitor of us creating and living technique based on storytelling most of which don’t turn out to it to the weekend this year, wrote a book earlier this year the life we want to is the story to help people improve their Don’t assume you can’t be true or accurate. our keynote speaker, Paula called Your Life, Your Way: a we tell ourselves.” She told the lives. She said: “Many people are 2 do something until you Meir, shares advice from her practical guide to getting your audience how Huntington’s governed by a model of thinking try – even small steps of trying inspirational presentation about s**t together. Paula is no stranger had defined her story for the in which life experiences lead to something new or different taking control of your story. to Huntington’s – her mother first 40 years of her life. “I had choices, which then lead to our move you in a more positive and brother both died from the lived life fast, convinced that my life’s story.” Paula encouraged the direction. Thank you to our event sponsors disease. life would be, to all intents and conference to think differently. Get your copy of Exemplar Health Care, Elysium purposes, over by my mid-forties.” “Define what you want your Watch out for the ‘little Paula’s book, 3 Neurological, St Andrews Paula is passionate about An incident at work led her to story to be. This leads to a much voice inside your head’ Your Life, Your Way: Healthcare, PJ Care, Healthcare improving people’s lives – completely re-evaluate her life. greater number of choices, and that might try to dissuade a practical guide to Matters and Repose. especially in the Huntington’s She left her job and decided to that then leads to more positive you from thinking or doing community. “I understand what go it alone. She read, trained, and experience, regardless of the something differently. Our brains getting your s**t together, cards you have been dealt in life.” from www.hda.org.uk/shop 50% of the proceeds will go to the HDA 26 27 BRANCH FOCUS ARTICLE HEAD

Spotlight on….

Up and down the country, local Huntington’s Disease Association The Newcastle branch committee Newcastlebranches and support groups bring people together – a cup of tea, Christina Bage (back), Joanne a chat, a collection in a supermarket. Each of the 57 groups, all Somerville and Alan Bright run by volunteers, make a huge difference for people affected by “I feel part Huntington’s in their local community. They offer the chance to meet others facing similar experiences and provide comfort and of a family companionship to those who need a listening ear and a shoulder where everyone Members of the branch lit up the to lean on. Gateshead Millennium Bridge in pink and green for Huntington’s understands.” Disease Awareness Week Each edition we’ll be learning more about one of these groups – first up is the Newcastle branch.

Joanne: I’ve been involved with bridge with banners, balloons, and helping them to access local the HDA for many years. When buckets and leaflets to talk to support. They can meet others I moved to the North East five the public about Huntington’s. who understand and make years ago I contacted the branch. We had an information stand at lifelong friendships. Everyone was so lovely and made the local library and volunteers Newcastle branch members get me feel so welcome. in Newcastle town centre with C: Our committee are all together once a month buckets and leaflets talking to brilliant and very supportive. How often do you meet and passers-by. Lighting up the bridge Our members know that we are what kind of things do you do gained lots of attention and there for them, whatever the when you get together? many people asked us questions. problem. We are like a close knit C & J: We meet once a month at The Light it up for HD campaign family. HDA branches and Walkergate hospital, usually for was a huge success – everyone support groups meet about two hours. In the first hour from the branch got involved I’m training to be a counsellor we have a chat over coffee. Our and there was a great feeling of so my role as chair helps with up and down the country. local Specialist HD Adviser John community spirit. this. Some members like to To find your nearest The Newcastle Huntington’s Joanne and Christina tell us how Gregor usually arranges speakers talk. Some people are seeking group visit Disease Association branch they became involved and what to come along. Recently we’ve How has being involved with counselling but want to talk www.hda.org.uk/ began in 1993 after founder the group gets up to. had workshops on mindfulness, the branch helped you and your to someone who knows about branches Christine Baines lost her mother first aid, financial advice, and the branch members? Huntington’s and understands. to Huntington’s. She reached out How did you become involved new scheme of accreditation for J: It’s allowed me to stay Now my two nephews have to see if there were others who with your local HDA branch? care homes. The second hour connected with the HD Huntington’s, I can use my were going through a similar Christina: I got involved about is our formal business meeting community. I enjoy getting experiences and knowledge to experience and was amazed that eight or nine years ago. Christine discussing fundraising, upcoming together with my HD friends help them and others. C: The group means a lot to over 100 people turned up. The re-stood as chairperson and she events and information from and keeping up to date with me. We help each other, which group is now run by a volunteer asked if I could help as secretary. head office. We have a summer information, events and research. What does the branch mean to means I get comfort from others committee led by Christina Christine’s sister Dianne, who social where we all go out for a I feel part of a family where you? too. I feel very privileged to be Bage, Joanne Somerville and passed away, was my sister-in-law. meal together. everyone understands. It’s given J: It gives me a sense of able to do this. Our Specialist HD Alan Bright. They offer support She had the Huntington’s gene, me support and a place to go belonging and giving back to the Adviser John helps us enormously for families and help to organise which was passed onto my two For awareness week, we lit up the to talk and share experiences. Huntington’s community. It’s a and we couldn’t do it without his information days, children’s nephews who I now help. Gateshead Millennium Bridge It helps people who attend by big part of my life and who I am help and advice. The group can activities and social events. in HDA colours. We stood by the reducing feelings of isolation as a person. It’s my family. only go from strength to strength.

28 29 TIPS

Top 10 tips: For more information about caring for Caring for someone someone with Huntington’s disease with Huntington’s please visit: www.hda.org.uk/ disease carers

Are you caring Tip 1 Tip 3 Tip 5 Tip 7 Tip 9 for someone with Check hunger Check temperature Check if something Check sleep Check emotional Huntington’s disease? A person with Check if the person has changed Huntington’s disease wellbeing Huntington’s affects the Huntington’s disease is too hot or too Depression is very can make the person The person with network of nerve tissues needs a nourishing diet cold. A person with common for people really fatigued. Poor Huntington’s disease in the brain and spinal and increased calories Huntington’s disease with Huntington’s sleep is common – and can feel lonely and in a way that is manageable. The may not tell you how they feel, can be the reason for changes cord that co-ordinates disease. The person frightened. They can person with Huntington’s disease so always ask. Check the person’s can also become frustrated, in mood and overall wellbeing. think about the same things over our bodies. It changes the may have lost any feelings of clothing and room temperature angry, irritable and more Short power naps during the and over. This can have a negative whole person – body, mind hunger. They may have lost their to make things better. impulsive. If you’re concerned day can be really helpful. Read impact on overall wellbeing. Help and behaviour. sense of taste. about the person’s mood, check Professor Jenny Morton’s simple to improve the person’s self- rules for a great night’s sleep on A better diet has a big impact on Tip 4 if something has changed. Also esteem and emotional wellbeing the HDBuzz website: But a person with overall wellbeing. Check communication check if the person is hungry, through exercise, activities and too hot or too cold, tired because hdbuzz.net/120 family support. Huntington’s disease If the person is hungry, this can challenges they’re not sleeping, feeling lonely doesn’t always realise that have a negative impact on their Communication or frightened, or has another Tip 8 movements and mood. Making Tip 10 they’re changing. They can challenges can health condition. sure that the person is not hungry Check medication Check other health find it difficult to express make the person can have a positive impact on feel frustrated and Check if the person conditions their thoughts – and movements – and reduce their Tip 6 anxious. This can have a negative is under or over- speech can be a challenge. frustration and fatigue. Check falls If you’ve checked impact on their movements. medicated because The person may not tell this can have whether the person Hunger, pain, mood and room If the person is falling is hungry, too hot or you how they feel. Tip 2 temperature can all have an more frequently, check an impact on diet, mood, communication and overall too cold, tired because Check pain impact on the person’s ability to that they are getting they’re not sleeping, or feeling If you’re caring communicate. A speech therapist a nourishing diet. Also wellbeing. Pain can affect lonely or frightened and you’re for someone with can make an assessment, give check their mood, if the person is mood and emotional still concerned about a particular Huntington’s disease, useful advice and introduce too hot or too cold, tired because wellbeing. The person issue, then this could be related exercises to help with speech. they’re not sleeping, or has this checklist could may not tell you how to another health condition. This can also help the person to another health condition. Also they feel. Changes caused by Remind the person’s GP that help you. swallow more safely. check the person’s environment the disease may mean that the people with Huntington’s disease and make any necessary changes person can’t feel pain anymore. can also have other health to prevent falls. An occupational This is dangerous, especially if the conditions. therapist can help with this. person cuts or burns themselves. So, if you think that the person could be in pain, always ask. You can cut out and keep these pages to refer back to or give a copy to support workers, carers and healthcare professionals helping you look after your loved one.

30 31 Visit our online shop Browse and buy from our brand new range of awareness raising merchandise and support the Huntington’s Disease Association. Visit our online shop www.hda.org.uk/shop

Be part of the team! Our stylish t-shirts are on sale now

New to the shop! Be one of the first to buy a HDA drinks bottle

Support the HDA and raise awareness with a wrist band

Get in touch For advice and support or to speak to a Specialist HD Adviser Email: [email protected] Phone: 0151 331 5444 Web: www.hda.org.uk/supportnearyou

Get involved Become a fundraising volunteer Email: [email protected] Phone: 0151 441 5445 Web: www.hda.org.uk/fundraising

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