STATUS – WE ARE NOT A CHARITY
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.
WHAT OUR FUNDS ARE USED FOR
PEER GROUP SUPPPORT, INFORMATION
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.
FUNDS FOR RESEARCH
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
FUNDS FOR RESEARCH
If you would rather make a general donation for research please donate on our campaign back on the below link:
Myositis UK – https://www.justgiving.com/myositis
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:
INDIVIDUAL FUNDRAISING CAMPAIGN
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 www.myositis.org.uk is a registered charity raising funds for myositis research and can be contacted via this website.
FUNDRAISING BY SHOPPING
Please shop online by using
New Wristbands now available, details on our Facebook page.