Supporting Myasthenia Gravis Sufferers Nationwide
MGA is the only UK charity supporting sufferers of MG It costs us £3,000 per day to run our charity; we provide medical research, specialist nurses, benefits advice, web site and forum, information packs, Patient Awareness days, educational material for GPs, Support Groups and government lobbying.
ONgoing Core Costs
Myasthenia Gravis Association
MGA supports people with the rare autoimmune disease Myasthenia Gravis (MG). The disease is characterised by fluctuating muscle weakness. It affects nearly 1 in5,000 people, and can affect anyone at any stage in their lives. we know of around 9,000 sufferers in the UK and Ireland. MGA 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 MG.
MGA have been operating for nearly 40 years. Our support groups are the backbone of the charity and we have a network across the country providing support, information and friendship for MG 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.
Care for People with Myasthenia Gravis
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
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.
Educating the Medical Profession and General Public about Myasthenia Gravis
Activities» Information leaflets and DVDs for Medical Professionals to advise on symptoms of MG and speed up diagnosis times.
» Sociall Media Presence to raise the profile of MGA and highlight the early symptoms to the general public
Rates of diagnosis of MG and length of time for diagnosis are a key indicator of our success of raising awareness amongst heath professionals
Research into the cause of MG 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 MG hoping to aid better treatment of the disease.
The outcomes of our research projects are a measure of their success.
The whole focus of MGA is to welcome people in to the MG 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.
The 'project' is the running of the charity - MGA 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.
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 - Project Cost: £3,000Loading graph....
Amount Heading Description £1,380 Care Support Groups, Nurses, Newsletter £630 Education Informaition for Health Professionals £990 Research Funding Medical Research Projects
MGA works throughout the UK and Ireland
Anyone who is diagnosed with any form of Myasthenia, their family and carers and anyone with an interest in MG.
We are the ONLY UK charity supporting people with Myasthenia, and we have been doing so for nearly 40 years. we have a strong working relationship with medical specialists in the field.
Read more about the Charity running this project.
Ruth is the Chief Executive Officer of MGA and oversees the day to day running of the charity and the team of head office and regionally based staff.
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