Publications List. 1. General factsheets. 2. Medical conditions factsheets

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1 Publications List We produce a wide range of publications, from factsheets about specific medical conditions to comprehensive guides on adapting your home. To order a free publication: Call the Information Line on info@muscular-dystrophy.org Please note: We do not charge for publications, however there are obviously costs incurred in producing and posting them. We ask you to please bear this in mind when requesting for items to be posted to you - particularly if you are considering ordering multiple copies or asking for things to be sent long distances or at short notice. 1. General factsheets About the Muscular Dystrophy Campaign How the Muscular Dystrophy Campaign can help An A-Z of professionals who may support you An A-Z of international muscular dystrophy organisations 2. Medical conditions factsheets Bethlem myopathy Becker muscular dystrophy Central core disease Charcot-Marie-Tooth disease (CMT) Congenital fibre type disproportion myopathy Congenital muscular dystrophies Congenital myotonic dystrophy Duchenne muscular dystrophy Duchenne muscular dystrophy: the older child Emery-Dreifuss muscular dystrophy Facioscapulohumeral muscular dystrophy Muscular Dystrophy Campaign 4 th Floor, 61 Southwark Street, London SE1 0HL Information Line: info@muscular-dystrophy.org Registered Charity No and Registered Scottish Charity No. SC039445

2 Fibrodysplasia Ossificans Progressiva (FOP) Inclusion body myositis Juvenile dermatomyositis Limb-girdle muscular dystrophies Limb-girdle muscular dystrophy 1B (LGMD 1B) Limb-girdle muscular dystrophy 1C (LGMD 1C) Limb-girdle muscular dystrophy 2A (LGMD 2A) Limb-girdle muscular dystrophy 2B (LGMD 2B) Sarcoglycanopathies: LGMD2C, LGMD2D, LGMD2E and LGMD2F Limb-girdle muscular dystrophy 2I (LGMD 2I) McArdle s disease Manifesting carriers of Duchenne muscular dystrophy MDC1A (merosin-deficient congenital muscular dystrophy) Medical conditions covered by the Muscular Dystrophy Campaign Metabolic disorders that cause pain and/or weakness on exercise Minicore (multicore) myopathy Mitochondrial myopathies Myasthenia gravis Myopathy Myotonias Myotonic dystrophy Myotubular (centronuclear) myopathy Nemaline myopathy Oculopharyngeal muscular dystrophy (OPMD) Periodic paralyses Polymyositis, dermatomyositis and sarcoid myopathy Rigid spine syndrome Ullrich congenital muscular dystrophy 3. Medical issues factsheets Alternative therapies Anaesthetics Carrier detection tests and prenatal diagnosis Dehydration Exercise and orthoses guidelines Gastrostomy Heart check Inheritance and the muscular dystrophies Making breathing easier Muscle biopsies 2

3 Nutrition and feeding Pregnancy and reproduction Pressure ulcers Questions about ventilation to ask your consultant Spinal surgery: making a decision Steroids and Duchenne muscular dystrophy Surgical correction of spinal deformity 4. Daily living issues factsheets Behaviour Booklist on the muscular dystrophies and neuromuscular disorders Clothing and fashion for wheelchair users Dream trips and wishes for children and young adults Education Healthy eating for children with neuromuscular conditions Holiday information Personal relationships and sexuality Raising funds for people with muscular dystrophy Selling or donating second-hand equipment Transport Let s talk about feelings: counselling 5. Equipment factsheets Chairs to help with sit to stand Equipment to help you get up from the floor Information technology Neater Arm Support Powered profiling beds Toilet frames and bathroom equipment The adaptations process 6. Booklets for families / Description An introductory guide for families with a child newly diagnosed with Duchenne muscular dystrophy This booklet addresses parents and/or carers of a child recently diagnosed with Duchenne muscular dystrophy, offering support and information at this difficult time. The booklet is in a question and answer format and includes the questions most frequently asked by parents. (June 2006) 3

4 Duchenne muscular dystrophy: A guide for families with a child aged 5-12 years This is a reference guide for parents/carers of a child with Duchenne muscular dystrophy. It aims to answer some of the frequently asked questions and highlights areas that will need to be considered during the primary school years. It provides lots of advice on where to go for further information. (October 2006) An introductory guide for families with a child newly diagnosed with a neuromuscular condition This booklet aims to offer support and information to parents and/or carers of a child recently diagnosed with a serious muscle disorder other than Duchenne muscular dystrophy at this difficult time. The booklet is in a question and answer format and includes the questions most frequently asked by parents. (November 2006) Neuromuscular conditions: A guide for families with a child aged 5-12 years A reference guide for families with a child aged approximately 5-12 years with a neuromuscular condition. It look at issues that may arise and offers guidance as to where to go for additional information. (April 2008) Duchenne muscular dystrophy: the teenage years Information for teenagers who have Duchenne, and their families. This booklet covers education and employment as well as financial matters. (Feb 2009) 7. Booklets for children / Description DMD On the Ball Helpful facts and tips for boys with Duchenne muscular dystrophy, aged between 11 and 14. Discusses healthy eating and exercise and addresses some of the worries boys may have, from looking good to dealing with bullying. (2003) Everybody s Different, Nobody s Perfect A leaflet aimed at children with muscular dystrophy that explains what makes them different from other children and reinforces that we are all different. (2004) Hey, I m Here Too! (for brothers and sisters of children with Duchenne muscular dystrophy) This leaflet answers some of the questions a sibling might ask about their brother or sister s condition. (2004) Same but different A leaflet aimed at pupils who have a child with a neuromuscular condition in their school. (2006) 4

5 8. Physiotherapy Booklet / Description Physiotherapy Management for Duchenne muscular dystrophy This information pack includes a physiotherapy guide, exercise cards and an exercise chart. The pack is intended to support the practice of physiotherapy at home for children and young people with Duchenne muscular dystrophy. (2005) 9. Guides / Description Adaptations Manual (CD version only) A comprehensive guide to the selection and design of the most appropriate and cost-effective home adaptations for people with muscular dystrophy and allied conditions. Chapters about equipment and justifications for the provisions of equipment are also included. (2003) Adult Self Management pack This groundbreaking pack is designed especially for those diagnosed with a neuromuscular condition as an adult, contains essential information on the full range of issues to think about. Work through at your own pace, according to your condition and its rate of progression. Remember that all neuromuscular conditions are different so you will also need to refer to the relevant fact sheet for your condition (see fact sheets section). Contains two resources: 1. A small folder containing a diary, address book and medical alert carddesigned to be easily carried around with you. 2. An A4 folder, containing 36 fact sheets on a range of medical and daily living issues. (2008) Inclusive Education for Children with Muscular Dystrophy: Guidance for Primary and Secondary schools This comprehensive guide written for primary and secondary schools which have a pupil with, pupils who have muscular dystrophy or other neuromuscular conditions. The guide offers guidance to those special educational needs advisors; teachers or educational support assistants working with them and may also be helpful for parents working in partnership with their child s school to provide the best possible educational experience for their son or daughter. (January 2007) Wheelchair Provisions for Children and Adults with Muscular Dystrophy and other Neuromuscular Conditions: Best practice guidelines A comprehensive guide aimed at helping staff plan appropriate wheelchair and seating provision for children and adults with a neuromuscular condition. Although primarily aimed at Wheelchair Service staff, it can also be a useful resource of best practice for users, parents, carers and other health professionals. (2006) 5

6 10. Our services / Description Campaign The MDC s fundraising newsletter- an update for donors Impact Report The Impact Report contains information about the charity s activities in campaigning; fundraising; awareness raising; research; production of materials; provision of care and support to professionals and individuals and expenditure over the last year. Introduction Pack This pack provides details about the charity and how it can help people with neuromuscular conditions. It also includes information on care and support services that may be of use and information and resources to help raise the profile of neuromuscular conditions and raise funds. Joseph Patrick Trust A leaflet about the work of the Joseph Patrick Trust- the welfare trust of the Muscular Dystrophy Campaign which provides vital financial support towards specialist equipment which enables people with muscle diseases to remain independent. Target MD Our quarterly magazine with latest updates in research, events and news. Previous copies available for download from our website as PDF documents. 6