Project information

Supporting Myasthenia Gravis Sufferers Nationwide

myaware is the only UK charity supporting sufferers of myasthenia. Our daily runnings costs total £3,000 per day as we work hard to raise awareness of myasthenia, provide support for those living with it and their families, offer advice and tips as well as fund the research towards a cure.

Ongoing Core Costs

Charity information: myaware

myaware logo
  • Need

    Need

    myaware supports people with the rare autoimmune diseases - Myasthenia. The condition is characterised by fluctuating muscle weakness. It affects nearly 1 in 5,000 people, and can affect anyone at any stage in their lives. we know of around 12,000 sufferers in the UK. myaware offers a lifeline to the newly diagnosed as well as long term sufferers. People often feel isolated when diagnosed with a rare disease and doubly isolated by the physical symptoms of myasthenia.

    Solution

    myaware have been operating for over 50 years. Our support groups are the backbone of the charity and we have a network across the country providing support, information and friendship for myasthenia sufferers and their families. Our quarterly newsletter is distributed across the UK providing information and a connection for people who may not be able to attend meetings. Our online forum is a fantastic source of peer support and our Specialist Nurses are a huge source of support and information.

  • Aims

    Aim 1

    Care for People with myasthenia


    Activities

    » Support Groups offering care, information and friendship
    » Online Forum offering an opportunity for shared experiences and peer support
    » Specialist Nurses who offer a telephone service and medical advice.
    » Telephone Helpline which operates during office hours to signpost people to their local meetings, nurses or other sources of information

    What success will look like

    We know from a current survey that the things our supporters think we do well are the Specialist Nurses and Newsletter. Ongoing engagement with supporters and feedback.


    Aim 2

    Educating the Medical Profession and General Public about myasthenia


    Activities

    » Information leaflets and videos for Medical Professionals to advise on symptoms of myasthenia and speed up diagnosis times.
    » Sociall Media Presence to raise the profile of myaware and highlight the early symptoms to the general public
    » Online medical resource centre, free to access for any and all medical professionals

    What success will look like

    Rates of diagnosis of myasthenia and length of time for diagnosis are a key indicator of our success of raising awareness amongst heath professionals


    Aim 3

    Research into the cause of myasthenia and methods of living more comfortably with the disease.


    Activities

    » We fund a range of research projects across the UK investigating various aspects and types of myasthenia hoping to aid better treatment and a cure

    What success will look like

    The outcomes of our research projects are a measure of their success.


  • Impact

    Impact

    The whole focus of myaware is to welcome people in to the myasthenia family and offer them support, care, information and the hope that we are funding research that we hope will ultimately find a cure for the disease. In the meantime we can make sufferers feel as thought they are supported, informed, and not alone in their battle then. Our measure of success is the increased number of people on our database, and the feedback we receive from our supporters.

    Risk

    The 'project' is the running of the charity - myaware - which faces the same risks as any other charity. We have a strong board of 11 trustees who advise on all matters. We have a good 5 year plan which incorporates our fundraising strategy and targets, and a level of security. We maintain a strong and committed workforce, several of whom have been working fro the charity for may years and have an excellent working knowledge of the disease and the charity.

    Reporting

    We keep contact with our donors via our quarterly newsletter, and monthly e-news bulletins. Voting members are also invited to the annual AGM, and any supporter can attend their local Regional Conference (Patient Awareness Day) where we provide updates on the charity's activities.

  • Budget

    Budget - Project Cost: £3,000

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      Amount Heading Description
      £1,380 Care Support Groups, Nurses, Newsletter
      £630 Education Informaition for Health Professionals
      £990 Research Funding Medical Research Projects
  • Background

    Location

    myaware works throughout the UK.

    Beneficiaries

    Anyone who is diagnosed with any form of Myasthenia, their family and carers and anyone with an interest in myasthenia.

  • Why Us?

    Why Us?

    We are the ONLY UK charity supporting people with Myasthenia, and we have been doing so for over 50years. We have a strong working relationship with medical specialists in the field.

    Read more about the Charity running this project.

    People

    Sarah Cuthell

    Sarah is the CEO of myaware and oversees the day to day running of the charity and the team of head office and regionally based staff.

4 Year Old Toby who has Congenital Myasthenia

£3000

The cost of running MGA for one day

Thank you for giving me the strength to fight . MGA has been my lifeline when I felt all was lost and there was no hope

Julie Connolly