Action Duchenne is a phenomenal organization, and they really lead the way in supporting DMD families in the UK. I can’t say enough.
James Poysky (Parent)
As well as funding research into potential treatments and one day a cure, we also produce links to a range of resources to benefit the Duchenne community.
| Accident & Emergency Website | Enables A&E staff to access information immediately relevant to Duchenne muscular dystrophy – view here |
| Accident & Emergency Pack | This pack contains information on different areas of care in the event that the person living with Duchenne is admitted to A&E – order here |
| Steroids and Sickness | View here. If you have questions about steroid stress dosing, or your child or young person is unable to take a steroid dose down (or keep it down for an hour), we recommend you contact your GP, neuromuscular centre or care adviser. |
| DMD Carrier Leaflet | A ground-breaking leaflet providing support and guidance for female Carriers of the Duchenne gene – download here. |
| Standards of Care videos | Easy to follow videos helping you navigate the Standards of Care for Duchenne – watch here. |
| Talking to your child about Duchenne | A useful online leaflet helping you to create communication strategies – download here. |
| Talking to your child about Duchenne | A chance to watch our engrossing webinar with Dr David Schonfeld – watch here. |
| Learning & Behaviour in Duchenne | A chance to watch Dr James Poysky’s webinar – watch here |
| Passive & assisted passive physiotherapy | Physiotherapy videos for adults and young people living with Duchenne – watch here |
| North Star Ambulatory Assessment and the Oxford Scale | We explain these two scales in more detail here |
| Getting the right support at school | We’ve put together some of the most requested resources to help Duchenne families and their teams of professionals to put the right support in place at school – here. |
| 10 top tips for transition for young people living with Duchenne | A groundbreaking leaflet produced supporting the lottery-funded award-winning Takin’ Charge project |
| Applying for grants to pay for equipment | We have created this short guide to help you feel more confident in making an application. |
| How to find out what benefits you may be entitled to | With the entitledto free benefit calculator, you’ll be able find out what you might be able to claim. You’ll need to enter your details to receive an estimate of your entitlement to benefits, tax credits and Universal Credit. |
Action Duchenne guides
Helpful links
| Adults living with Duchenne | Advice and guides Moving to adult services – what to expect NICE guidelines – for care and support of adults receiving social care Nutrition Guide – for adults produced by DMD Pathfinders |
| Duchenne and Me app | Developed by PTC to help patients and their families keep track of aspects of their health, routine and appointments – get app here. |
| Dental care for Duchenne | Download slides from Elizabeth Vroom of the World Duchenne Organisation or watch her presentation here |
| Duchenne Standards of Care Family Guide | This online guide takes you through the different topics or domains of the diagnosis and management of Duchenne muscular dystrophy – download guide. |
| Holidays and experiences | A list of organisations and trusts that offer support and advice for holidays, experiences and most of all fun! – follow the link. |
| Rough Guide to Accessible Britain | Download free guide here |
| RCPCH Recognising Neuromuscular Disorders | eLearning module – download here. |
| Sibs.co.uk | For brothers and sisters of people living with a disability – view website. |
| Together for Short Lives | Take a look at the transition checklist |
| Independent Provider of Special Education Advice (IPSEA) | Offers free and independent legally based information, advice and support to help get the right education for children and young people with all kinds of special educational needs and disabilities (SEND). |
| Special Educational Needs and Disabilities Information Advice and Support Services (SENDIASS) | Offers information, advice and support for parents and carers of children and young people with special educational needs and disabilities (SEND). The service is free, impartial and confidential. |
| The Local Offer | Every local authority must publish a local offer. This will tell you what support is available for children and young people with special educational needs or disabilities, and their families. It should include information about education, health and care provision. It will also tell you about training, employment and independent living for young people with special educational needs or disabilities. |
| The Association of Directors of Children’s Services (ADCS) | The DCS has professional responsibility for the leadership, strategy and effectiveness of local authority children’s services. The DCS is responsible for securing the provision of services which address the needs of all children and young people. |
Books
A guide to Duchenne muscular dystrophy – information and advice for teachers and parents. Edited by Action Duchenne founder, Janet Hoskin, this guide provides everything teachers and parents need to know to support a child or young person with Duchenne at school and home. Medical experts and practitioners working with children with Duchenne in schools give advice on learning and behavioural concerns, physical management and the transition to adulthood.
Avery – Avery is like other birds most of the time, but sometimes, feels a bit different. But Avery is not alone. Avery was written and illustrated by Marta Altes in association with Professor Lucy Raymond to help start conversations between children, families and doctors about rare disease and research.
Dan & DMD – a children’s book on Duchenne muscular dystrophy
Dinosaur Mac – a story of a boy who truly knows how cool it is to exist. This picture book was created by a New Zealand Mum who has a son with Duchenne. It is used to start conversations with children at home and to share with school to give a little more understanding of Duchenne.
Michael Rosen’s Sad Book – an honest account of a father’s grief for his son from the illustrious pairing of two former Children’s Laureates.
Books for young siblings
Special Brothers and Sisters – helps siblings feel that they are not alone as they read 40 experiences of siblings aged from 3-18 told in their own words. The book includes tips for siblings on how to deal with some of the difficult issues they encounter in their lives, as well as highlighting the many positives of being a sibling. The book also has a glossary explaining different disabilities and medical conditions.
No Worries! Mindful Kids – an activity book for young people who sometimes feel anxious or stressed. This is a great book for children aged 7+ to help them express and manage their worries and other difficult feelings, and to help them feel calm.
(Action Duchenne) really do have a fantastic wealth of experience. For example, their information on education and learning was invaluable for us as parents, as well as for John’s school. Knowing the problems boys with Duchenne can often face meant that we could anticipate John’s educational needs. As a result, he is thriving at school.
James Ker-Lindsay (Parent)
