Recent Fundraising Events


Every December and June, Rod Allen’s old golf mates, play an extraordinary game of golf using arcane rules that even the organiser, former Ladies Captain, Victoria Westgarth, struggles to manage.

By dint of pre- purchasing escapes from bad shots, bunkers, etc., the team that buys the greatest number of escapes can win.

RAGS or Rod Allen’s Golf Society, was started by him for golfers who wanted to play on a Saturday without having to join the more serious players who played for money. As time developed, it became as much as a social group as a golfing group and the members still play with each other both at home and away from the course.

As the need for funds for MFSN developed, a summer and a winter competition were established.

A number of Rod’s friends help with the organisation, Victoria, Keith, Sarah, Rob and Richard help and the Golf Day is presided over by Rod Allen himself at his most genial.

This year’s winners, shown above, Justin, Andrew, Mary and Keith, with their ill gotten gains. Also shown is our local Hero, Rod Allen himself.

No comment on Keith’s trousers please!

So many of you do so much to raise funds for us and this is just one example that is enjoyed by all of the participants.



Support our Work

Our Aims and Objectives

  1. To provide support to all people with the condition, their carers and their families.
  2. To raise awareness of all the myositis conditions and raise funds to support these objectives.
  3. To support our members via Facebook, our website and by arranging meetings around the country, for them, their families and their carers.
  4. To publish and distribute leaflets informing members, families and health professionals about our condition.

In order to continue to provide this vital support we need help from people to support our group by donations via JustGiving

Support our work through JustGiving

We work closely with Muscular Dystrophy UK and they are currently funding research into IBM.

Support Myositis Research


Myositis wristbands are now on sale at £2.00 each, proceeds go to our JustGiving account.  Details of how to buy yours can be obtained by sending us a message HERE






MFSN when set up, decided that, at least at its beginning, it did not want to become a charity and therefore has never sought charitable status.

OUR RELATIONSHIP WITH THE CHARITY MDUK – We were fortunate enough, right from the beginning to be taken under the wing of Muscular Dystrophy UK (MDUK) and as well as tremendous support they give to us all in so many other ways, they have kindly agreed to receive funds donated to us and to ring-fence them for us. These funds are then released to us as and when we need them for suitable purposes.



We support our members via a Face book Page, a Website and by arranging meetings around the country, for them, their families and their carers. Occasionally when a member has had an extremely stressful time we may arrange a gift such as flowers. We also publish and distribute leaflets informing members, families and health professionals about our condition.


We only raise funds for support purposes but as you can imagine, we are vitally interested in supporting those people and organisation seeking to find a cure or treatment to ameliorate the conditions under the Myositis umbrella.


Should you, your family or friends wish to make a donation towards the support group please go to


If you would rather make a general donation for research please donate on our campaign back on the below link:

Myositis UK –

Muscular Dystrophy UK supports high quality research to find effective treatments and cures; and lead the drive for faster access to emerging treatments for UK families. They are already funding one current research project related to IBM and are constantly on the look out to fund more ground breaking projects. You can read more information about this on the link below:


If you would like to do your own fundraising events to fund ground breaking research, you can set up your own fundraising page within the campaign page – once set up, your local Regional Development Manager will contact you and support you with your fundraising.

For more information about fundraising events in your local area please contact the fundraising hotline (0300 012 0172) at Muscular Dystrophy UK and they will put you in touch with your local Regional Development Manager.

There are lots of fundraising events to get involved with across the country and you can find them on the below link:

If you are considering setting up a family fund similar to Rod Eddon please have a read of the family fund requirements on the below web page. If interested, submit an interest form and your local Regional Development Manager will get in touch with you to discuss whether this is the right sort of fundraising for you and your family.


MYOSITIS UK at is a registered charity raising funds for myositis research and can be contacted via this website.


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