\g 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 interventions required for people affected by the everyone who has participated in the consultation 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.