Myositis
The Myositis Support Group is a UK charity providing advice and support to individuals and their families affected by Dermatomyositis, Polymyositis, Inclusion Body Myositis and Juvenile Dermatomyositis.
We also raise funds and promote medical research to improve the diagnosis, treatment, management and understanding of these rare illnesses.
The Aims of the Myositis Support Group are:
- To provide information to sufferers and their families
- To help give them a better understanding of their illness
- To relieve the isolation felt by an individual when a rare illness is diagnosed
- To guide sufferers in the right direction for treatment
- To raise awareness of the conditions
- To raise funds to promote and support research
The Myositis Support Group is able to offer:
- Free UK membership
- Newsletters
- Information Guides
- Annual meeting/conference
- Advice on specialist centres
- Interactive website – Discussion Forum and Email Contacts (Buddy Listing)
- Listening Ear Telephone Network – volunteers who offer support
- Active fundraising
From the very beginning one of the main aims of the charity was to raise money to fund research. Our first fundraising target was £60,000 and was reached in 1992. The Christine Saunders Memorial Post was advertised in the British Medical Journal but interest in Myositis research was negligible at the time and the advert generated few responses and none pursued their enquiry further to fill the Post. Myositis research remained near to non-existent for a few more years. In 1994 a Myositis Support Group member suggested a doctor at King’s College London who had expressed an interest in establishing a Myositis clinic and research into the diseases. A meeting with Professor David Scott proved fruitful and was the breakthrough that was needed.
Since the charity was established in 1985 over £500,000 has been raised by donations and fundraising. Success has been achieved from the background of supporting and promoting these rare illnesses which the general public and even some of the medical profession know little about. The charity has been able to fund many projects and has supported Myositis endeavours at King’s College Hospital, Great Ormond Street Hospital, University College London, Bath University, Hammersmith Hospital, Birmingham University, Manchester University, and the International Myositis Assessment and Clinical Study Group
Les and Irene Oakley are proud and delighted in what the charity has achieved so far, and encourage your support to help them continue the great work they are doing.
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Visit http://www.myositis.org.uk/ for more information