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

Brief History of the Myositis Support Group

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 Support Group helps people and their families affected by Dermatomyositis, Polymyositis, Inclusion Body Myositis, and Juvenile Dermatomyositis. The Support Group became a registered charity in 1987.

When the Support Group 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 Support Group 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.

The Myositis Support Group 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 Support Group 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 Support Group 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. Subsequent meetings have been held in 1990 (Hammersmith Hospital), 1995 (Institute of Education, London), 1999 (Paragon Hotel, Birmingham), 2003 (Paragon Hotel, Birmingham), 2007 (Forest of Arden Hotel, Birmingham). The cost of a large meeting every year is not feasible so each year with the AGM a smaller medical meeting is held for members. Read more about our Meetings.

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. Read more about Research.

Today, the Support Group 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 has expanded to house the hub of the charity occupying the whole room and evicting the dining room furniture. At present, the funds of the Support Group do not justify moving to a rented office with the accompanying overheads and paid staff.

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

Board of Trustees

Mr Leslie Oakley - Chairman
Miss Paula Oakley - Honorary General Secretary
Mrs Joanne Goode - Honorary Treasurer
Mr Anthony Hindle
Mrs Susan Hindle
Ms Catherine Risley

The Board meets four times a year and is elected annually at the AGM.

Group Coordinator

Mrs Irene Oakley

The Support Group is fortunate to have Irene as coordinator. Irene is responsible for the day to day running of the Support Group and answering enquiries from sufferers, families, welfare agencies, and medical professionals. Irene’s role is essential to fulfil the aims of the charity. She provides people with guidance to ensure that they get the correct advice and information. Irene is also responsible for printing and collating information packs, publishing the Newsletters and Flyers and organising the AGM and related meeting (either patient medical meeting or conference). The organisation of the Support Groups fundraising is also managed by Irene which includes distribution of London Marathon forms, Grand Summer Draw tickets and subsequent prizes as well as the ordering and mailing of Christmas cards. Irene works closely with the Trustees to ensure the charity is run efficiently and effectively.

Unfortunately Irene cannot be in all places at once. In general she works between the hours of 10am to 3pm but the answer-phone is always on. If your call is not answered please leave a message as you may have telephoned while she was out on a charity errand. Irene works on her own most of the time so during busy periods, for example prior to the AGM or organising a mailing, your telephone call or email may not be replied to immediately. Irene listens daily to the answer-phone and checks her email so if the matter is urgent she will endeavour to get back to you.

Medical Advisors