1. Emma Mowat • Head of MDC Support Services • Freephone 0800 652 6352 • www.muscular-dystrophy.org

2. 1. The Muscular Dystrophy Campaign • Who we are • What we do • How we help • Who we refer to • Work with schools

3. 2. Who we are • The only national charity focusing on all muscle disease • Pioneer in the search for treatments and cures since 1959 • Dedicated to improving the lives of all people affected by muscle disease • Rely almost entirely on voluntary donations to support our vital work

4. 3. What we do • Provide free practical and emotional support • Fund world-class research to find effective treatments and cures • Campaign to raise awareness and bring about change • Award grants towards the cost of specialist equipment

5. 4. Information and support • Call: 0800 652 6352 (freephone) • Email : info@muscular-dystrophy.org • Write to: Muscular Dystrophy Campaign • 61 Southwark Street • London • SE1 0HL • Visit our website: www.muscular-dystrophy.org • Open weekdays from 9am- 5pm

6. 5. Publications • Wide range of booklets, fact sheets and guidelines on specific conditions, equipment, medical and social issues • Adaptations manual CD • Adult Self-Management Pack • Education, physiotherapy, wheelchairs • Transition coming soon!

7. 6. Regional Care Advisors (R.C.As) • Employed by the MDC, in conjunction with certain hospital trusts • Specialist knowledge of the issues facing people with NM conditions • Liaise with statutory services, education authorities and other service providers • Provide advice and support

8. RCAs based at hospitals/ clinics in: • Glasgow • Edinburgh • Belfast • Newcastle • Leeds • Liverpool • Nottingham • Birmingham • Oxford • Bristol • London • Taunton

9. 7. Care Events • Information days- For those who want to learn more about specific conditions/circumstances • Study days- For those involved in education of people with NM conditions • Family weekends- Social & information weekends for families living with NM conditions • Professional networks- Peer support and information sharing- School, Physio, O.T.

10. 8. Muscle Centres • Staffed by clinicians and health professionals with interest and experience in the field • Translate basic science findings into clinical trials and potential new treatments • Some centres provide on-site research and training projects • Ultimate aim for this work is development of improved services for patients Referrals should be made in writing by GPs

11. 9. Partner charities & groups • For some conditions, specific groups offer informal support, advice and information • Talk to someone who has been there • Attend condition specific events • Details on the MDC website- or contact the Information Service 0800 652 6352 www.muscular-dystrophy.org

12. Matthew.lanham@nmcentre.com Rosie Paver, Head of Physiotherapy 01606 860 911 Rosie.paver@nmcentre.com 10. The Joseph Patrick Trust • The welfare fund of the Muscular Dystrophy Campaign • Assistance with applications for financial grants towards the cost of essential items of equipment • Tesco charity of the year 2009-2010- £3m funding for equipment up to age 19 • Visit the Muscular Dystrophy Campaign website or call 020 7803 4814

13. 11. The Neuromuscular Centre (NMC) • Physiotherapy, hydrotherapy and active exercise programmes for adults • Train and gain a range of skills and qualifications in Graphic Design and IT • NMC Design + Print offers employment opportunities in graphic design, business & administration • Regular newsletter One Voice • Matthew Lanham 01606 860 911 • www.nmcentre.com

14. 12. Schools and muscle disease • Approx 2,500 children with muscle disease attending schools in the UK at any given time • Individuals’ needs change as they progress • Many transfer to special school because needs aren’t met • Most children can be fully included

15. 13. Working with children • be fully accessible • act on bullying • collaborate with parents • develop a supportive curriculum • ask for expert help • plan for the future and anticipate needs • gather information Demonstrate positive attitude to disability

16. 14. Working with parents • review- one annual review isn’t enough, build them in regularly • support- Parents shouldn’t provide back up for trips/ be called in to give tablets to their child • talk to them- Request that child leaves- parents weren’t aware there was a problem! • understand- Might be late due to time taken getting ready, or busy after school with physiotherapy appointments

17. 15. MDC Resources • Online and written support materials- ‘Inclusive education for children with muscular dystrophy and other neuromuscular conditions’ • Information service • Schools Network Others • Jennifer Trust for SMA • Duchenne Family Support Group • Contact a Family Directory

18. Thank you! • Emma Mowat • Head of MDC Support Services • Freephone 0800 652 6352 • www.muscular-dystrophy.org