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About Myositis UK (formally Myositis Support Group)

Myositis Support UK is the only Registered Charity (UK) charity specific for the inflammatory myopathies; Dermatomyositis, Polymyositis, Inclusion Body Myositis and Juvenile Dermatomyositis.

Myositis UK was established in 1986 as a contact group for parents of children with Juvenile Dermatomyositis being treated at the Hammersmith Hospital in London. It became a Registered Charity in 1987 with the addition of adult members with Dermatomyositis and Polymyositis located throughout the UK. The charity was first called the Dermatomyositis and Polymyositis Support Group with a purpose of support through its Information Guide, Newsletter and Medical Meetings and fundraising to raise money for research into the illnesses. Members with Inclusion Body Myositis also joined the charity and in recognition of their increasing numbers the charity modified its name in 2000 to the Myositis Support Group.

With over 700 members in the UK and many more on the Over Seas Mailing list the charity by suggestion of the medical profession and support of the Trustees and members once more (in 2013 at the 25 years as a Registered Charity AGM and Conference) modified its name to Myositis UK in recognition of its place as a national organisation funding medical projects through-out the UK and international collaborations abroad.

Charity Structure

Myositis UK was set up by Les and Irene Oakley when their daughter was diagnosed with JDM with the help of a young doctor, Christine Saunders. Christine was enthusiastic and under the neurology team of Prof Dubowitz she treated and researched JDM along with fellow laboratory researcher Dr Jo Cambridge at Hammersmith Hospital. Sadly, Christine was diagnosed with terminal cancer in the prime of her career and passed away in 1987, the relatively new charity was devastated with her loss but continued on. In recognition of her founding enthusiasm for the need for a myositis charity, research grants are awarded in her name.

Today the charity is still run by Les and Irene Oakley and a small group of dedicated Trustees who volunteer their time to improve the diagnosis, treatment, understanding, and prognosis of the rare inflammatory myopathies namely, Juvenile Dermatomyositis, Dermatomyositis, Polymyositis and Inclusion Body Myositis.

To read more about the history of the charity please click here

Myositis UK aims Myositis UK achieves its aims by

  • 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

  • To provide information to sufferers and their families
  • Free UK membership
  • Seasonal Newsletters and Flyers
  • Information Guides
  • Annual meeting/conference free to members
  • Advice on specialist centres and research projects
  • Interactive website – Community Zone with Forum and private messaging
  • Social Media through Four Facebook Groups
  • Active fundraising
  • Funding research and collaborations
  • Representation and participation at medical meetings and seminars
  • Teddy-Bo Book and bear for JDM
  • Access to welfare advisor

Staff - Group Co-ordinator

Irene Oakley
Irene is a part-time employee and volunteer.

Irene is responsible for the day to day running of the Myositis UK which includes 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 publishing the Newsletters and Flyers, organising the AGM and conference, and representing the charity at medical conferences.

The organisation of the charity's fundraising is managed by Irene which includes organising the information for London Marathon and British 10K runners, distribution of London Marathon forms, Grand Summer Draw tickets and subsequent prizes as well as the ordering and mailing of Christmas cards.

Irene is in regular contact with the members of our Medical Clinical and Research Panel, attends meetings held by UKMyoNet, International Myositis Genetics Collaboration, JDMRG-MUK and as well as relevant meetings hosted by the NCVO, ARMA, Arthritis Research Campaign, Medical Research Council and Muscular Dystrophy Campaign. She represents the charity by manning the Myositis UK stall at the major medical conferences including the Neuromuscular Translational Research Conference and British Society for Rheumatology conference, hospital patient meetings which can include giving a talk, and sits on the MRI in IBM and Charlotte Marie Tooth (CMT) steering committee. 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 her hours are flexible to take into account busy times, however, 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, the London Marathon, medical meetings or organising a membership mailing, your telephone call or email may not be replied to quickly. Irene listens regularly to the answer-phone and checks her email so if the matter is urgent she will endeavour to get back to you.

Trustees (Executive Committee)

Les Oakley
Les is the Chairman and compiles the charity mailings including the Newsletter. He can usually be found in the office at least once a week replying to letters and emails and corresponding to funding contacts. Les was on the steering committee of the SELAM trial and represents the charity at medical meetings and gives after dinner talks when he can (around working full time). Les is a dedicated fundraiser his larger events include cycling from Paris to Hayling Island, running the London Marathon, Great South Run and more recently abseiling the Spinaker Tower to mark the 25th year of Myositis UK as a Registered Charity. Outside his place of work he runs a second-hand bookstall and his endeavours have raised over £50,000. His efforts were recognised in 2005 with the award of an MBE for services to people with Myositis.

Paula Jordan
Paula is the Hon. General Secretary and volunteers a full-day once a fortnight for administration, printing and collating Joining Packs, updating membership lists, email lists and writing text for the website and articles for the newsletter (Myositis News). She also runs the charities social media, namely the Facebook Pages; Myositis UK, Team Muscle, Teddy-Bo and JDM. Paula gives talks, attends UKMyoNet meetings, JDRG-MUK meetings, International Myositis Genetics Conference, is a MyoNet (EuMyoNet) external representative and has completed the Myositis Summer School held in Sweden.

Joanne Goode
Jo is the Honorary Treasurer. In addition to regular treasurer duties she maintains the forums in the community zone of the website. Jo is also co-administrator on the Facebook Pages Myositis UK and Team Muscle. Jo represents the charity at meetings and fundraising events including UKMyoNet and the London Marathon, respectively. Jo was diagnosed with Dermatomyositis 20 years ago.

Nichola Coleman
Nichola is the JDM mum behind the Teddy-Bo book and bear. She is a keen fundraiser, raises awareness of Myositis and helps in the charity office and at many events and meetings. Nichola helps with the charities social media co-administering the JDM Facebook Page (which she initially set-up as a fundraising page to raise money for the Teddy-Bo project and has since evolved) and the Teddy-Bo Facebook Page. She is a parent representative at GOSH and attends medical meetings including the JDRG-MUK meeting.

Medical Research Advisors

Professor David Scott and Professor David Isenberg are medical research advisors for Myositis UK. Their input may be sort for advice on funding proposed research and medical projects.

Prof Scott has been involved with the charity for over 20 years and chaired almost all of the charities yearly Medical Meetings/Conferences. When he retired from active involvement (MCR Panel Member) in July 2013 he became a MRA.

Prof David Isenberg has been working with Myositis UK for many years developing the MITAX and MYDAM indices for measuring disease activity and damage in Myositis which are now in clinical and research use.

Medical, Clinical & Research Panel Members

The doctors and researchers on the Myositis MCR Panel are actively involved in treating or researching Myositis in the UK. Some of them will have or have had projects funded by the charity. Many of these experts attend our annual conference to update members on their projects and/or join the Q&A panel. They may be asked for assistance in reviewing research proposals that they are not directly involved in.

Prof Bob Cooper Liverpool University Rheumatologist

Dermatomyositis and Polymyositis specialism

Genetics of Myositis
MITAX & MYODAM indices
Clinic
Dr Patrick Gordon King’s College London Rheumatologist

Dermatomyositis and Polymyositis specialism

UK Myonet Chairman
Clinical Treatment trials Clinic
Dr Hector Chinnoy Manchester University Rheumatologist

Dermatomyositis and Polymyositis specialism

Genetics of Myositis
MITAX & MYODAM indices
MyoNet (EuMyoNet) Lead Committee
Clinic
Dr Michael Rose King’s College London Neurologist

Inclusion Body Myositis specialism

Establishment of Best Practice Guidelines for IBM
Clinical Treatment Trials
Clinic
Prof Neil McHugh Bath University Rheumatologist

Dermatomyositis and Polymyositis specialism Serology of Myositis
Dr Zoe Betteridge                Bath University     Researcher in Myositis

Serology of Myositis
Clinic
Dr Harsha Gunawardena Bristol University  Rheumatologist

Dermatomyositis and Polymyositis specialism

Serology of Myositis
Clinic
Prof Lucy Wedderburn Institute of Child Health (UCL) Paediatric Rheumatologist

Juvenile Dermatomyositis specialism

JDM Registry & Repository
Muscle Biopsy Studies
MITAX & MYODAM indices
JDRG Chief Investigator
Dr Clarissa Pilkington Institute of Child Health (UCL) Paediatric Rheumatologist

Juvenile Dermatomyositis specialism

JDM Registry & Repository
Muscle Biopsy Studies
MITAX & MYODAM indices
Clinic
Prof Mike Hanna Queens Square (UCL) Neurologist

Inclusion Body Myositis specialism

Director of MRC Centre for Neuromuscular Diseases
IBM research
Drug trials
Clinic
Dr Matt Parton Queens Square (UCL) Neurologist

Inclusion Body Myositis specialism

IBM research
Drug trials
Clinic
Dr Pedro Machado Queens Square (UCL) Neurologist

Inclusion Body Myositis specialism

IBM research
Drug trials
Dr Jasper Morrow Queens Square (UCL) Neurologist

Inclusion Body Myositis specialism

IBM research
Drug trials
Dr Stephen Ray Oxford Brookes University Researcher

Stem Cell Research

Volunteers

Bridget Kalloushi
Bridget is the charities auditor. She kindly donates her services for free.

Janet Horton
Janet is a Welfare Advisor and volunteers her time to Myositis UK and other charities.

Laura Oakley
Laura helps on the day of the AGM and Conference administering Registration and manning the Reception Desk.

Philippa Mann
Philippa helps with data inputting following a Membership Update performed by the charity.

Amanda Sayers
Amanda helps with data inputting following a Membership Update performed by the charity.

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