MND SUCKS but we are strong MND Awareness broken heart T-Shirt

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Finding your way with bereavementOur booklet on finding emotional support when bereaved. Includes a practical overview of what to do when someone dies, and supporting children and young people who may also be grieving. England’s opponents France made a memorable gesture during RLWC2021 when they wore warm-up shirts with a message for Rob Burrow ahead of the Group A match at Bolton – and are again lending their support. Our booklet containing information answering possible concerns about sexual expression and intimacy, for anyone affected by MND.

Former Leeds Rhinos scrum-half Rob Burrow MBE was diagnosed with motor neurone disease in December 2019, just two years after ending his playing career by captaining Leeds to a record-extending eighth Super League Grand Final. Information about voice banking, the process of recording yourself speaking to create a computerised version of your voice for use on a communication aid. Breathing and ventilation Guidance on what to consider if you are planning to use air travel and wish to take NIV equipment on the journey. Benefits, financial support and social care This section of our main guide for carers guide looks at ways to support younger members of the family. RL Commercial Managing Director, Rhodri Jones, says: "For the third year running our partners at Oxen, together with RL Commercial, are supporting a cause close to the hearts of so many in Rugby League. Our relationship with the MND Association follows our work with the Mose Masoe Foundation in 2021 and fundraising for Tongan tsunami relief in 2022 when both England and the Combined Nations All Stars wore Tonga-inspired shirts.

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An interactive version of the ADRT form included in information sheet 14A - Advance decision to refuse treatment (ADRT) and advance care planning. If you become unable to make decisions or communicate, an ADRT allows you to state in advance which treatments you wish to refuse or withdraw in specific circumstances. Our range of award-winning guides, providing comprehensive information about MND and how to manage its impact. See Introductory information above for smaller booklets. Sometimes the words and acronyms used by health and social care services can be confusing, so w e've have provided lists with explanations to help give a basic understanding of what they all mean.

RL Commercial Managing Director, Rhodri Jones, says: “For the third year running our partners at Oxen, together with RL Commercial, are supporting a cause close to the hearts of so many in Rugby League. Our relationship with the MND Association follows our work with the Mose Masoe Foundation in 2021 and fundraising for Tongan tsunami relief in 2022 when both England and the Combined Nations All Stars wore Tonga-inspired shirts. Driving, transport and holiday guidance focusing on different ways to get out and about with reduced mobility. The booklet also includes information about public transport, wheelchair accessible vehicles and mobility schemes that could help support you. The shirt represents three things I love dearly: England Rugby League; the MND community and, of course, Rob. Throughout Rob’s diagnosis the Rugby League world has got completely behind him. It shows the impact he had and continues to have on the sport. And the players who get to wear it will feel incredibly proud to represent Rob and their country – they’ll feel 10 feet tall. How to open conversations about your diagnosis with family, children, friends, colleagues and health or social care professionals. This guide includes information on difficult conversations, planning ahead and using advocates to help you raise awareness of your needs.Some of our sheets have been converted into small booklets to bring similar subjects together. Explore the option above for guides and booklets. Overviews The Rob Burrow Leeds Marathon took place on Sunday 14 May 2023 with the start and finish at the iconic Headingley Stadium, where Association Patron Rob accomplished some of his greatest sporting achievements.

Information about available options if you are living with MND and considering whether to continue or leave employment. A version number is also provided - this tells you if an item has been updated between revisions. This usually happens if something has changed. For example, reforms to government benefits might require a change to our information on benefits.

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This booklet includes guidance on how communicate about MND with family, children, friends, colleagues and health or social care professionals. The following items are all designed to help you make other people aware of your needs, wishes or preferences. Using our forms to record your needs See also references to forms in the next drop down as further ways to raise awareness of your needs. Broadcast in 2022, the BBC documentary Rob Burrow: Living with MND took an intimate look at Rob’s life with MND more than two years on from his diagnosis. The programme follows Rob on a trip to the swimming pool with wife Lindsey, cheering on his children at school sports day and an appointment with his neurologist. This is the second time Rob has generously allowed the cameras into his home to raise awareness, after sharing the first year after being diagnosed in the documentary Rob Burrow: My Year with MND, which was released in 2020. The powerful programme was shortlisted for a National Television Award in 2021. Developed by SITraN – the Sheffield Institute for Translational Neuroscience and made in collaboration with people living with MND, their videos help explore decision-making about assisted ventilation and how it is used in daily life.

It can feel challenging to plan ahead for future care and end of life, but this can help ensure your wishes are respected. It may also help those close to you feel better prepared. Developed by Sheffield Institute for Translational Neuroscience (SITraN), MyTube is a useful online resource containing short videos and information about gastrostomy to help people with MND learn more and make decisions about the intervention. It features both health professionals, and people with MND discussing their experiences. Information about the NICE guideline, which gives recommendations about treatment, care and support for people with MND.Our information sheet that can guide you to appropriate information to help you access suitable support. An outline of the services provided by MND care centres and networks, as part-funded by the MND Association. This section of our main guide for people with MND looks at ways for the whole family and friends to communicate about the changes the disease will bring. Information about Kennedy’s disease, which is a separate, but similar condition to MND and is supported by the MND Association. Information to help if you are supporting someone with MND who may be affected by changes to thinking and behaviour.