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Brief History of Myositis UK

Les and Irene Oakley started the charity in 1985 as a contact for parents and guardians of children suffering from Juvenile Dermatomyositis after their daughter Paula developed the illness at the age of five in 1983. Within months they were contacted by adult sufferers who were too ill to help themselves in a similar manner. The charity helps people and their families affected by Dermatomyositis, Polymyositis, Inclusion Body Myositis, and Juvenile Dermatomyositis. The charity became a registered charity in 1987.

When the charity was first set up it was called the Dermatomyositis and Polymyositis Support Group but because of it's "jaw breaking name" was fondly shortened to the D and P Support Group. Inclusion Body Myositis was a recognised disease when the charity was established but was thought to be very rare. This is now known not to be true and IBM is one of the common muscle diseases in people over 50 years of age. In recognition of this and the growing numbers of members with Inclusion Body Myositis the charity changed its name in July 2000 to the Myositis Support Group.

Myositis UK started from very humble beginnings. The first purchase was a second hand typewriter for £10 allowing the first Newsletter to be produced. With limited funds the first Newsletters were photocopied as favours from friends. There were few leaflets or information guides for Dermatomyositis or Polymyositis so Les set to work writing the first question and answer guide which was reviewed by doctors and to this day remains a useful "first port of call" for many in understanding the myositis. The charity first went online with its own website in 1997. This resource has grown over the years and includes an interactive Community Area. Les Oakley spoke of his role and adventures as Chairman of the charity in a talk in 2000.

In 1987 the first medical session for Myositis was arranged for sufferers and parents of JDM children at the Hammersmith Hospital and a follow on meeting in 1990 (Hammersmith Hospital). Holding a full day conference yearly was not feasible as little new information was available to warrant the cost. Small medical update meetings were held yearly at the Kings Fund and the Welcome Trust in London. The charity held a large conference every four years for members alongside the AGM; 1995 (Institute of Education, London), 1999 (Paragon Hotel, Birmingham), 2003 (Paragon Hotel, Birmingham), 2007 (Forest of Arden Hotel, Birmingham).

With a growing interest from the medical profession to improve diagnosis, understanding and treatment of myositis and Myositis UK funding research the conference is now held yearly. Over the years the conference has been modified to improve interest to members. Talks are no longer all centred on medical updates, although they do play a large part as it is important for the researchers funded by Myositis UK to provide this information. Over the years additional speakers have spoke on nutrition, aromatherapy, welfare and the changes to benefits, managing illness, coping with pain, and aids and gadgets. Where possible the conference is divided up into Break Out sessions so that talks and discussions are geared towards the type of myositis or the needs of that type of myositis. The JDM Break Out session is suitable for children (JDMers and their siblings) to attend as it is informal and some form of play is provided. Read more about our Meetings.

From the very beginning one of the main aims of the charity was to raise money to fund research. The 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 member of the charity 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. Read more about Research.

Today, the charity is still run from the home of Les and Irene Oakley. What once was a typewriter on a small desk in the corner of their dining room expanded to occupy the whole room, evicting the families furniture for second hand desks and shelves, until 2009 when a purpose built office was assembled at the end of their garden. The funds of the charity do not justify moving to a rented office with the accompanying overheads and paid full time staff.

As you can appreciate Les and Irene Oakley are proud and delighted in what the charity has achieved so far.

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FRSB Myositis UK has made a Fundraising Promise
commissioned by the Fundraising Standards Board to ensure
its fundraising activities are open and fair.