60 years - Muscular Dystrophy UK€¦ · WiFi: Select CNFERENCE Conference name: Sofitel Password:...

www.musculardystrophyuk.org

Making every day countNational Conference | Saturday 12 October 2019

60 yearsof progress together

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Floor plan: Sofitel London Heathrow, conference centre

On the cover: Delegates enjoying a chat at National Conference 2018 / Photo © Chris O'Donovan

Changing Places Toilets are being provided by Mobiloo outside the ground floor registration exit. Look out for the signs or ask any of our Here to Help team in their bright orange t-shirts. Accessible toilets with hoists, riser seats and frames are available within the conference area.

Photographs: Please note that photographs and footage will be taken at the National Conference today. These will be used by MDUK for marketing and publicity in our publications, on our website and in social media. Please advise Toby Maslin or the photographer if you have any concerns or if you do not wish to appear in any photos or videos.

If this is your first time at the National Conference, come and meet some of the MDUK team in the Paris Room for a chat between 9am–9.50am.

Here to helpOur conference team in bright orange T-shirts are here to help you.

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Main auditorium

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WELCOME

It’s a great pleasure to welcome you all to this year’s National Conference.

Sixty years ago, when the charity was first established, research into muscle-wasting conditions was largely neglected, the life expectancy for people living with conditions such as Duchenne muscular dystrophy was around 14 years and attitudes towards people with disabilities were largely negative.

Now, promising new therapies are coming to the fore and we have seen an explosion of clinical trials. Better support and care has seen life expectancy increase and greater awareness of the rights of disabled people, enshrined in law, which has lowered the many barriers that stop people living full and independent lives. And there is still so much more to do.

This year has been one of pace and change as we renew our determination to find effective treatments for all muscle-wasting and associated conditions and support people to achieve their life goals. We believe this as passionately now as we did when we were established 60 years ago. And it’s only by working with and alongside you that we can achieve this.

Today you’ll hear about what we are doing as a charity to support innovative research and the progress being made in truly ground breaking research and of our hopes for the future.

There are lots of opportunities to find out more about the practical side of living with a condition. From exploring ways to look after your emotional and mental health, supporting a child to become independent, how to go about securing financial support, engaging a personal assistant, to going on holiday and adapting your home.

We’re also delighted to welcome Annie Blake and her husband Kevin and remind ourselves of the power of friendship. Earlier this year well-known

US musician Hilary Roberts, a friend of Annie, wrote a song that helped her through a difficult time as she struggled with her condition. And we’ll also be hearing from Trailblazer campaigner Emma Vogelmann who won a legal landmark victory earlier this year.

This is the first time the President’s Awards has been open to public nomination and we were overwhelmed by the response. Thank you to everyone who nominated someone and thank you to the judges, many of whom join us today.

Later this afternoon you’ll have the opportunity to enjoy some taster sessions that will take place in the main auditorium. We have powerchair football, boccia (similar to bowls), seated yoga and a physiotherapy session.

Finally, we know that one of the most important aspects of a day like today is the opportunity for you to meet new people living with muscle-wasting and associated conditions and to catch up with old friends. Every day we hear how these connections count, and how sharing experiences builds lasting friendships.

Thank you again for joining us here in London. We hope you enjoy discovering the wide array of activities on offer today. Thank you to everyone who supports us with their time, talents, experience and donations; you enable us to make every day count!

Catherine Woodhead Prof Mike HannaCEO Chair


9am RegistrationVisit information stands and the shopTea and coffee available in the foyerTrailblazers in the London foyer

9.50am Welcome Catherine Woodhead MDUK CEO

9.55am Review of the yearProf Mike Hanna MDUK Chair

10.05am Muscular Dystrophy UK: 60 years of progress. Are we on the threshold of a new era?

• Research Prof Matthew Wood Professor of Neuroscience, Department of Paediatrics | Deputy Head Medical Science Division (Innovation), University of Oxford | Director of MDUK Oxford Neuromuscular Centre | Director Oxford Rare Disease Centre

Dr Melissa Bowerman Lecturer in Bioscience at Keele University and researcher into muscle and metabolic pathologies in neuromuscular disorders

• Support and care Sue Manning Neuromuscular Specialist Care Advisor

Andrew Robertson MDUK volunteer

Dr Ros Quinlivan Consultant in Neuromuscular Disorders, MRC Centre for Neuromuscular Diseases, Queen Square, London

• Future priorities Catherine Woodhead MDUK CEO

11.15am Muscular Dystrophy UK AGM

11.25am Tea and coffee available in foyer

11.45am Morning breakout sessions

12.30pm–1.45pm Lunch in foyer

1.45pm Living with a muscle-wasting condition: Karen Attenborough in conversation with Annie and Kevin Blake and Emma Vogelmann

2pm President's Awards 2019 presented by Michael Attenborough CBE

2.40pm Tea and coffee available in foyer Move to interactive activities or breakout sessions 3pm Afternoon breakout sessions

4pm Afternoon breakout sessions

5pm Conference ends

Our conference team in orange T-shirts are here to help you.

Youth zone and creche – in Athens Room for those who have pre-booked.

Individual confidential sessions with an information and advocacy advisor will be available from 3pm in the Paris Room. Please book your session at the information stand.

All talks will be held in the main auditorium unless stated.

3–5pm Taster session in main auditorium throughout the afternoon including:Powerchair football / Boccia / physiotherapy workshop / seated yoga

AGENDA


Room: Arora 4 Room: Arora 7 Room: Arora 5 Room: Arora 6 London 1&2

Morning session 11.45am-12.30pm

Session 1 Session 2 Session 3 Session 4Trailblazers conference

Research Q&A: from lab to clinic Talk with researchers and the MDUK research team.(This session is also available at 4pm).

Financial and practical supportWhat support is available to meet the costs of living with a condition?

EmployabilityPresenting Trailblazers Ready and able report alongside employers and disabled people who contributed to it.

Engaging a Personal Assistant How can a Personal Assistant support you?

Love, intimacy and relationshipsHighlighting the different approaches young people take to relationships and how to overcome some of the potential barriers.

Afternoon session 3pm-3.45pm

Session 5 Session 6 Session 7 Session 8Trailblazers conference

Getting involved in researchWhat impact are patients having on research and how can you get involved?

Accessing treatments: lessons from SpinrazaAn update on access to the SMA treatment Spinraza, and discussion on the lessons learnt as we campaign for a fairer way to approve treatments in the future.

Supporting a child into adulthoodExperiences of parents supporting their child to become independent.

Mental health mattersHow to look after your mental health needs.

Future priorities for the Trailblazers networkAn interactive session to explore future priorities for the Trailblazers network and to discuss what works well and what works less well.

Afternoon session 4pm-4.45pm

Session 9 Session 10 Session 11 Session 12

Care advisors What are care advisors and what can they do for you?

Research Q&A: from lab to clinic Talk with researchers and the MDUK research team.

Going on holidayPractical tips and insights.

Adapting your homePractical tips and insights from those who have adapted their homes to suit their needs.

BREAKOUT SESSIONS


Prof Mike HannaMDUK Chairman

Mike is the Chairman of Muscular Dystrophy UK (MDUK). He is passionate about applying research to find better treatments for patients and families with neuromuscular conditions. He is a Consultant Neurologist specialising in neuromuscular conditions at the National Hospital, Queen Square, Director of the MRC Centre for translational research in neuromuscular conditions and Director of the UCL Institute of Neurology. He leads an active research programme and has published more than 200 peer-reviewed original research papers.

Catherine WoodheadMDUK CEO

Catherine has worked in the charity sector since 2000, with her fundraising experience spanning senior strategic and operational planning roles in a number of large and small charities. A former member of The Prince’s Charities fundraising advisory group, Catherine joined MDUK in August 2016 as Director of Development and was appointed CEO in September 2018.

The Hon. Michael Attenborough CBEMDUK Vice President

After meeting boys with Duchenne muscular dystrophy at a local fete in 1962, Lord Richard Attenborough pledged his commitment to fight muscle-wasting conditions. His passion, dedication and hugely successful fundraising were instrumental in getting us to where we are today. This commitment to MDUK has remained in the family through his son Michael and Michael's wife Karen. Michael is a great supporter of MDUK and has been instrumental in securing financial support for the Richard Attenborough Fellowship and is a key speaker at many of our events.

Karen AttenboroughMDUK Vice President

Karen is a Vice President of MDUK and works closely with our supporters. She has been instrumental in securing a significant grant towards our Assistive Technology Award Scheme. Karen's passion for the families that she meets and works on behalf of at MDUK is unrivalled. She is key in securing celebrity contacts for events such as BGC Charity Day and our Celebrity Sports Quiz. Today Karen will be interviewing Annie and Kevin Blake and Emma Vogelmann.

Prof Matthew WoodProfessor of Neuroscience, Department of Paediatrics | Deputy Head Medical Science Division (Innovation), University of Oxford | Director of MDUK Oxford Neuromuscular Centre | Director Oxford Rare Disease Centre

Matthew directs the Laboratory of RNA biology and Neuromuscular Diseases at the University of Oxford. He is currently Director of MDUK Oxford Neuromuscular Centre and Director of the Oxford Rare Disease Centre. He is an advisor to numerous research funding agencies including the UK Medical Research Council and is a director of the University of Oxford’s technology transfer organisation, Oxford University Innovation.

KEYNOTE SPEAKERS


KEYNOTE SPEAKERS

Dr Melissa BowermanLecturer in Bioscience at the Keele University School of Medicine and a Group Member of the Wolfson Centre for Inherited Neuromuscular Disease in Oswestry

Melissa, in addition to her role at Keele University, School of Medicine, is also a principal investigator in the UK SMA Research Consortium, a member of the Motor Neurone Disease Association (MNDA) Biomedical Research Advisory Panel (2018-present) and a member of the editorial board of Brain Sciences (2019-present).

Sue ManningNeuromuscular Specialist Care Advisor

Sue is a member of the MDUK Services Development Committee who has worked in the neuromuscular services at Leeds General Infirmary for 25 years. She was instrumental in the early development of the Paediatric Neuromuscular Service. She now works as a specialist care advisor in a dedicated, multi-disciplinary service. Her current role entails offering advice and support to families affected by a neuromuscular condition, from the time of diagnosis through to the transition to adult services. This also includes liaison with other professionals in health, education and social care.

Andrew RobertsonMDUK volunteer

Andrew was diagnosed with limb girdle muscular dystrophy in the summer of 1999. Andrew is CEO of a family business employing 65 staff and has recently become a Trustee for the Centre for Independent Living in Kent. Andrew’s firm has hosted a black tie fundraiser for MDUK every year for the last nine years and more recently Andrew has been actively involved in the campaigning side of the charity, regularly attending APPGs, most notably our Mental Health Matters campaign. Andrew was featured on BBC South East with his son Thomas.

Dr Ros QuinlivanConsultant in Neuromuscular Disorders, MRC Centre for Neuromuscular Diseases, Queen Square, London

Ros trained in paediatric neuromuscular disease and was the first clinical neuromuscular fellow at Guy’s Hospital, funded by the Muscular Dystrophy Campaign. She has been a consultant in paediatrics and neuromuscular disease since 1995 working in Oswestry and Birmingham Children’s Hospital. She became Director of the Wolfson Centre for Neuromuscular Disease in Oswestry before moving to London in 2010 to lead on transition and develop a Young Adult Neuromuscular Service. She is currently based at the National Hospital for Neurology and Neurosurgery and has sessions at Great Ormond Street Hospital. She leads a large nationally commissioned service for people with McArdle's disease and related disorders. She developed and is clinical lead for the Neuromuscular Complex Care Centre at Queen Square. She chairs the London and South East Coast Strategic Neuromuscular Network and is chair of the British Myology Society.


RESEARCH GALLERY

Thank you to our sponsors

We create technology to help children and adults with disabilities communicate, access computers and control the environment around them. From learning in new and interactive ways to intuitive and efficient communication for text and symbol users, we have solutions to support you now and in the future. Find out more and contact us at thinksmartbox.com, your questions are always welcome.

Audentes Therapeutics is a leading AAV-based (adeno-associated virus) genetic medicines company focused on developing innovative products for serious, rare neuromuscular diseases. Please visit www.audentestx.com/patients to learn more.

Visit our research gallery in the Paris foyer and look out for the fantastic pictures showing researchers' amazing work. Look out for our Facebook competition when you can vote for your favourite image. www.facebook/MDUK

Sarepta Therapeutics aims to profoundly improve and extend the lives of patients with rare genetic based diseases and is currently applying its expertise to develop therapies for a variety of neuromuscular conditions. We are pleased to support the 2019 MDUK Conference. To learn more about Sarepta, please visit www.sareptatherapeutics.co.uk


Research Q&A: from lab to clinicArora 4 11.45am–12.30pm / Arora 7 4pm–4.45pm

Learn how therapies are developed and how research carried out in the lab progresses into the clinic, through this Q&A session. This is an opportunity to hear from one of the UK’s leading clinicians, and distinguished neuromuscular researchers who work in the lab, and to ask them your questions.

Dr Kate AdcockMDUK Director of Research and Innovation

Kate joined MDUK from her role as Head of Neuroscience and Mental Health with the Medical Research Council. After gaining her PhD in Neuroscience she was a post-doctoral assistant at the University of Basel and in the Department of Diagnostic Imaging at the University Children’s Hospital in Zurich before joining the Wellcome Trust in 2005.

Dr Federica MontanaroSenior Research Fellow at University College London

Federica trained in Neurobiology from McGill University, Canada. She joined the lab of Prof Louis Kunkel – who discovered the dystrophin gene – at Harvard Medical School, USA. In 2005, she became assistant professor at the Ohio State University and established her lab within the Gene Therapy Centre at Nationwide Children’s Hospital. In 2016, she joined the UCL Dubowitz Neuromuscular Centre as senior lecturer. Her research focuses on the dystrophin protein and how it functions in the heart, which is especially relevant to gene therapy and exon skipping treatments. She receives some of her funding from MDUK.

Dr Ros QuinlivanConsultant in Neuromuscular Disorders, MRC Centre for Neuromuscular Diseases, Queen Square, London

Biography on p7.

Prof Dominic Wells Professor in Translational Medicine

Prof Wells qualified as a veterinary surgeon. In 1990, he took a lectureship at the Royal Veterinary College (RVC) in London, where he first started work on developing treatments for Duchenne muscular dystrophy. Prof Wells predominantly works on the development of treatments for neuromuscular conditions and is currently Vice-Chair of MDUK's Medical Research Committee.

Financial and practical supportArora 7 11.45am–12.30pm

Find out what support and assistance is available to help you meet the costs of living with a muscle-wasting condition, including the ways in which MDUK can help. Learn about our advocacy service, the Joseph Patrick Trust (JPT) equipment fund and how to go about crowdfunding for wheelchairs and equipment. Pick up a copy of our brand new guide Applying for PIP.

Neeru Malhotra MDUK Head of Information, Care and Support

Neeru joined MDUK in 2011 as a Care Advisor for the South East Coast. Since then, she has held a number of care and support roles within the charity. Neeru is passionate about our work, both professionally and personally. She previously held a role within the occupational therapy team at Evelina Children’s Hospital, London, and has a brother with Duchenne muscular dystrophy.

Beth Tingley MDUK Care, Support and Advocacy Officer

Beth joined MDUK in January 2019 as a Care, Support and Advocacy Officer, supporting individuals with muscular dystrophy or related neuromuscular conditions through our helpline and advocacy service. Beth also leads on MDUK's peer support network, which puts people with a condition in touch with one of our peer support volunteers, who also have a muscle-wasting condition.

Alice Black MDUK Equipment Grants Co-ordinator

Alice joined MDUK in 2018 as the Equipment Grants Co-ordinator for JPT, the grant-giving arm of the charity. JPT provides funding towards the cost of essential equipment for people living with a muscle-wasting or related neuromuscular condition. Alice supports applications through the process, from initial enquiry through to Panel meetings and claiming the grant.

BREAKOUT SESSIONS


EmployabilityArora 5 11.45am–12.30pm

Discuss the barriers to employment that were uncovered in the MDUK Trailblazers’ Ready and able report and share your experiences. How can we remove those barriers? Hear from and chat with employers, jobseekers and people managing their condition in the workplace. Find out how to get involved with the Moving Up project and gain practical tips for talking to employers.

Emma Vogelmann MDUK Work Experience Development Officer

Emma leads on the charity’s work on disabled employment, running the Moving Up programme and leading on policy in this area. Emma authored the 2019 Ready and able report on the barriers to employment faced by young disabled people.

Fraser Macleod Best place to work Lead, BT Technology

As part of BT Technology’s Diversity and Inclusion programme, Fraser’s role is to find young local talent from all parts of society who are interested in technology. This has included a successful neurodiversity placement programme which has led to full employment. Placements and apprenticeships are now being opened to young talented people living with muscle-wasting conditions across the UK.

Millie Hawes MDUK Moving Up participant

After graduating with a law degree, Millie didn’t know what she wanted to do. As someone living with SMA, she loved working with disabled people to challenge perceptions, create opportunities and remove societal barriers. This passion landed her first job in a Cheshire-based disability charity, after which she joined corporate law firm, Fieldfisher, as a senior corporate responsibility executive working on their pro bono, community and charity programmes.

Priya Kainth MDUK volunteer and Agile Coach

Priya was born with Charcot-Marie-Tooth disease (CMT) 4C and is a graduate from Aston University with a BSc in Computing. Priya held various roles at Deutsche Bank for four years and is currently at GlaxoSmithKine working as an Agile Coach. She has a strong passion and drive to help others to strive to achieve their ambitions in life regardless of their disabilities or the struggles they go through.

Engaging a Personal AssistantArora 6 11.45am–12.30pm

Learn how a Personal Assistant (PA) can support you, how to find out if you are eligible to be funded and how to go about employing a PA. Get some practical tips from people who have already done it.

Rob Burley MDUK Director Campaigns, Care and Support

Rob has spent 15 years in the charity sector, with a strong focus on health and disability. He has had senior roles at Alzheimer’s Society and Action on Hearing Loss (formerly RNID). He started his career at Breakthrough Breast Cancer where he completed the NCVO’s Certificate in Campaigning. He served as a trustee of Charityworks, the UK non-profit sector’s graduate programme, between 2015 and 2019 and is a Clore Social Leadership Fellow.

Michaela Hollywood MDUK Trailblazers Campaign Officer

Michaela earned her Masters degree from Ulster University. She was instrumental founding the Trailblazers. She has been honoured for her work with young disabled people with a Spirit of Northern Ireland Award, a Points of Light recognition and being named as one of the BBC 100 Most Inspirational Women in 2015.

Sulaiman Khan Trailblazer and employer of Personal Assistants

Sulaiman is the Founder and Chief Purpose Officer of ThisAbility Limited, a disability-led equity consultancy. He works to destabilise the accepted narratives of creativity and disability, for disabled creatives to change the culture to make equity the default. He is an independent consultant, speaker, and writer on Divergent Leadership, Creativity, and Equitability.

BREAKOUT SESSIONS


Getting involved in researchArora 4 3pm–3.45pm

Hear about the impact that patients can have on research into muscle-wasting conditions and some of the ways that you can get involved; participating in clinical trials, joining patient registries and helping shape research priorities.

Jenny SharpeMDUK Research Communications Manager

Before joining MDUK, Jenny completed a PhD in mitochondrial biology. She translates complex research findings making it easy to understand for non-professional audiences. Jenny represents MDUK on the patient advisory group of the PREFER project, which is investigating how patients’ views and preferences can best be integrated within drug development.

Claire O’Hanlon MBEChair of MDUK’s Northern Ireland Council and parent of a child participating in a clinical trial

Claire's family has a long history of Duchenne muscular dystrophy, with seven boys having been diagnosed since the 60s. This includes her eight-year-old son Luke and her seven-year-old cousin Brian. She is an active campaigner and is Chair of MDUK's Northern Ireland Council.

Helen StockdaleMember of MDUK’s Lay Research Panel

Helen is a daughter, mother and aunt to boys/men with Becker muscular dystrophy. Her career has spanned the pharmaceutical industry, teaching high school science and entrepreneurial start-up companies. She helped establish the MDUK Lay Research Panel. She has a keen interest in scientific research and her family has raised tens of thousands of pounds for MDUK.

Ben Porter John Walton Muscular Dystrophy Research Centre

Ben is UK Myotonic Dystrophy and FSHD Patient Registry Project Manager and Curator at the John Walton Muscular Dystrophy Research Centre. He promotes both registries to stakeholders, co-ordinates the registries and any associated research, ensures that the registries are working towards the best practice in the rare disease community and curates patient data.

Accessing treatments: lessons from SpinrazaArora 7 3pm–3.45pm

Get up-to-date information on access to the SMA treatment Spinraza. Find out who is eligible to receive it and how the treatment is being rolled out. We’ll explore the lessons learnt as we campaign for a fairer way to approve treatments in the future.

Clare Lucas MDUK Head of Policy and Campaigns

Clare has been working in charity campaigning for nine years with a focus on health and disability. She joined MDUK in September 2017 and launched the Fast Track to treatments campaign a month later. Since then she has been responsible for overseeing all of the charity’s campaigning, policy and parliamentary work, as well as the activity of the Trailblazers team.

Jonathan Kingsley MDUK Parliamentary and Policy Manager

Jonathan joined MDUK in 2008, and since then has been integrally involved in parliamentary and policy work. He leads MDUK’s parliamentary engagement across the UK, focusing on Fast Track to treatments, better healthcare and access to benefits.

Dr Kate Adcock MDUK Director of Research and Innovation

Kate joined MDUK from her role as Head of Neuroscience and Mental Health with the Medical Research Council. After gaining her PhD in Neuroscience she was a post-doctoral assistant at the University of Basel and in the Department of Diagnostic Imaging at the University Children’s Hospital in Zurich before joining the Wellcome Trust in 2005.

BREAKOUT SESSIONS


BREAKOUT SESSIONS

Mental health mattersArora 6 3pm–3.45pm

An opportunity to discuss the psychological and emotional support for people living with a muscle-wasting condition and the parents of children living with a condition. This was a hugely popular session last year and is an opportunity to find out more about support available, some practical tips about looking after your own mental health needs and what MDUK is doing in this area.

Bobby AncilMDUK Head of Head of Outreach, Commissioning and Professional Development

Bobby has been with the charity since 2008 when he set up the Trailblazers network. He now leads our work to influence and support the NHS to provide best practice care for people with a muscle-wasting condition. By leading work to launch and manage regional and national neuromuscular clinical networks across the UK, MDUK has been able to secure 63 new NHS-funded care advisors and over £6.4m worth of new NHS investments in neuromuscular services.

Dr Sadie Unsworth-ThomasSpecialist Clinical Psychologist, Bristol Royal Hospital for Children

Sadie is a specialist clinical psychologist at Bristol Royal Hospital for Children, working with children and their families affected by life-threatening illness. She has specialised in this area of work and has developed a specific interest in supporting children and families living with muscle-wasting conditions. Sadie has led on the development and piloting of Hear my voice, a new workshop programme for young people with muscle-wasting conditions.

Supporting a child into adulthoodArora 5 3pm–3.45pm

Hear the experiences of people who have supported their children into adulthood. This is an opportunity to explore how to navigate the potentially challenging shift in relationship between parents and children. The session will offer some emotional and practical insights.

Suni NarayanNeuromuscular Care Advisor and Specialist Physiotherapist, Southampton Hospital NHS and MDUK Head of Clinical Development

Suni has been working in the muscle field since 2011 as a care advisor and a physiotherapist with the NHS. Since 2016, she has been working with the charity leading a team of advocacy officers based in different clinics around the UK. Suni is able to share her unique insight of NHS workings and experiences across the healthcare and voluntary sectors to enhance services across both sectors.

Jeffrey Vogelmann

Jeffrey's daughter Emma was diagnosed with a muscle-wasting condition at the age of one, and he has provided a portion of her care needs for 25 years. Originally from Chicago, they moved permanently to the UK 10 years ago. Emma lives at home but manages her own Personal Health Budget, and hires all her own PAs. Jeffrey has complete confidence in Emma's ability to travel independently with her PAs and he has trained several of her friends to provide her care needs so that she can enjoy activities solely with friends without the need for a PA to tag along.

Emma Vogelmann MDUK Work Experience Development Officer

Emma leads on the charity’s work on disabled employment, running the Moving Up programme and leading on policy in this area. Emma authored the 2019 Ready and able report on the barriers to employment faced by young disabled people.


Care advisors: who are they and what can they do for me?Arora 4 4pm–4.45pm

Find out more about the support Care Advisors provide, how MDUK works in partnership with them and how to work with us to secure an advisor if there isn’t one locally.

Bobby AncilMDUK Head of Head of Outreach, Commissioning and Professional Development

Bobby has been with the charity since 2008 when he set up the Trailblazers network. He now leads our work to influence and support the NHS to provide best practice care for people with a muscle-wasting condition. By leading work to launch and manage regional and national neuromuscular clinical networks across the UK, MDUK has been able to secure 63 new NHS-funded care advisors and over £6.4m worth of new NHS investments in neuromuscular services.

Sue ManningNeuromuscular Specialist Care Advisor

Sue is a member of the MDUK Services Development Committee who has worked in the neuromuscular services at Leeds General Infirmary for 25 years. She was instrumental in the early development of the Paediatric Neuromuscular Service. She now works as a specialist care advisor in a dedicated, multi-disciplinary service. Her current role entails offering advice and support to families affected by a neuromuscular condition, from the time of diagnosis through to the transition to adult services. This also includes liaison with other professionals in health, education and social care.

Going on holidayArora 5 4pm–4.45pm

We all love a good holiday but it can be frustrating getting around if you have a muscle-wasting condition. Join this session to share experiences and get some really useful practical tips for going away.

Michaela Hollywood MDUK Trailblazers Campaign Officer

Michaela earned her degree in Public Relations from Ulster University in 2014 and a Masters degree from the same institution. Michaela was instrumental in the foundation of Trailblazers in Northern Ireland. Michaela has been honoured for her work with young disabled people, having received a Spirit of Northern Ireland Award, a Points of Light recognition from Prime Minister David Cameron and being named as one of the BBC 100 Most Inspirational Women in 2015.

Graham Race Queen Elizabeth's Foundation

Graham is a pioneer in the field of access to commercial flight for disabled people, having designed the award winning MERU TravelChair and set up Queen Elizabeth’s Foundation (QEF) ‘Tryb4ufly’. QEF is a UK national charity that provides services for disabled people. QEF Accessible Aviation provides information, practical demonstration and training to support disabled people who are considering flying. It has three mock aircraft cabin in Surrey, Birmingham and Leeds where disabled people can try equipment and discuss their flight.

Chris Wood

Chris has been campaigning and lobbying for nearly four years for better accessibility in air travel. From a holiday to Mexico with his daughter where the flights were awful in 2015, he decided to research why wheelchair users were not allowed to fly in their own wheelchairs. Fast forward to the present day and a lot has happened. Chris approached and lobbied the Government with some success; his campaign forms part of the Governments Aviation Strategy 2050.

Lauren Access Your Life

See p15 for details.

BREAKOUT SESSIONS


BREAKOUT SESSIONS

Adapting your homeArora 6 4pm–4.45pm

Practical tips and insights from those who have adapted their home to suit their needs and how to go about it.

Demelza StuartMDUK Advocacy and Information Lead and an Occupational Therapist

Demelza is based in Northern Ireland, where she helps people with muscle-wasting conditions get the care and support they are entitled to. As a qualified Occupational Therapist (OT), Demelza supports families and individuals across the UK on issues such as housing, equipment or adaptations, and liaises with relevant community and health trust OTs.

Andrew RobertsonMDUK volunteer

Andrew was diagnosed with limb girdle muscular dystrophy in the summer of 1999. Andrew is CEO of a family business employing 65 staff and has recently become a Trustee for the Centre for Independent Living in Kent. Andrew’s firm has hosted a black tie fundraiser for MDUK every year for the last nine years and more recently Andrew has been actively involved in the campaigning side of the charity, regularly attending APPGs, most notably our Mental Health Matters campaign where he met the Minister for Mental Health. Andrew was featured on BBC South East with his son Thomas.

Colin JonesOccupational Therapist, Birmingham City Council

Colin is the Lead Occupational Therapist (OT) for Children, Young Persons and Families, Birmingham City Council. He is passionate about occupational therapy, development of the profession/clinical field and in innovation so service users get the best treatment and care. He is responsible for assessments and provision of specialist equipment and adaptations for children and young people. Colin is an active member of the Royal College of Occupational Therapists (RCOT).

Taster sessionsArora Suite (main auditorium) 3pm–5pm

We’re delighted to be able to offer a range of interactive activities. Please sign up for a slot at the Information stand.

Powerchair football

This is the fastest growing disability team sport in the UK. Come and have a go with MDUK’s Sports Development Officer Ryan Sipple and Adam McEvoy, National Development Manager at the Wheelchair Football Association.

Boccia

You can also try out boccia, a Paralympic sport similar to bowls, with Ryan and Adam.

Physiotherapy workshops

Get some physiotherapy hints and tips and explore some basic exercises with MDUK’s Head of Clinical Development and physiotherapist Suni Narayan.

Seated yoga

Join Maude Hirst from Maude Hirst Yoga to try some accessible yoga.


TRAILBLAZERS' CONFERENCE

Love, intimacy and relationshipsLondon Suite 11.45am–12.30pm

Young disabled people and their partners discuss their dating and relationship journeys. A safe space to ask questions and have a discussion around potential barriers and solutions to relationships. The panel will be made up of young people from different backgrounds who approach relationships and disability in a slightly different way.

Zoë Hallam MDUK Trailblazer

Zoë is 29 years old and has limb girdle muscular dystrophy. She has been a member of the Trailblazers network since 2008 and works with a number of other disability charities on matters of social equality. Zoë met her husband Will in 2008 while studying at Oxford University, and they now both live and work in London. Their relationship has been the subject of previous Traiblazers literature and their wedding was featured online as an example of how to merge traditional and practical elements when you are a bride in a wheelchair.

Lauren and Felix

They created Access Your Life Ltd, a unique and innovative website that enables people living with a disability and their carers to become part of a non-biased online community. Together they encourage people to review medical products, communicate with others, share knowledge and seek advice. All of which can optimise the experience for others looking to find the best and most suitable medical products! They have also set up a trusted rehoming scheme that allows people to sell their unwanted devices onto someone who truly needs it! While giving their community an insight into life as an interabled couple and their trusty assistance dog!

Future priorities for the Trailblazers networkLondon Suite 3pm–4.45pm

An interactive session to explore future priorities for the Trailblazers network and to discuss what works well and what works less well.

Lauren West Trailblazers Manager and employer of Personal Assistants

Lauren joined MDUK in December 2015 and works in the Trailblazers team. However, prior to joining MDUK, Lauren had been a member of Trailblazers since it started. Lauren has spinal muscular atrophy Type 2 and is a full-time wheelchair user living independently with full-time support.

To find out more go to:

Helpline: 0800 652 6352 Research Line: 020 7803 4813

[email protected]

Muscular Dystrophy UK, 61A Great Suffolk Street, London SE1 0BURegistered Charity No. 205395 and Registered Scottish Charity No. SC039445

Every day counts when you're living with a muscle-wasting condition.

With over 70,000 people in the UK living with these conditions, MDUK is urgently searching for treatments and cures to improve lives today and transform those of future generations. Together, we're pressing for faster access to potential drugs and we're driving change to see better care and support to help people stay active, independent and connected.

We understand that muscular dystrophy and muscle-wasting conditions can change everything. That's why we're here for anyone who is affected, right from the moment of diagnosis and beyond. We're here to help people take back some control of their lives and to live well with the condition. We understand the everyday challenges of muscular dystrophy and muscle-wasting conditions, so we're here with information and advice, together with emotional and practical support, a network of local groups and an online community.

www.musculardystrophyuk.org

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