Welcome to the website for our group, the Myositis Friends Support Group (MFSN). Our hope is that together with our Facebook pages and Keep in Touch meetings (KITs) we can create a vibrant community that will achieve our aims and objectives, which are awareness and support of the Myositis community here in the UK.
We are working to create the type of organisation that we want to be a part of, so to date we have become a committee of 6, with former committee members helping us out and the committee have a skype meeting roughly monthly to discuss and progress issues that we think are important to our members.
Muscular Dystrophy UK
Not wanting to become a charity ourselves, we have associated the group with Muscular Dystrophy UK. This association provided us with a quicker route to get up and running and allows us to use their expertise as a major charity. Since we joined up with them we have received nothing but the best of support from them and we cannot praise them too highly. Not only do they support us in a broad sense but they manage and ring-fence any funds we raise and provide speakers for our meetings.
We recognise how isolating having and caring for someone who has a Myositis disease can be and how good it is to meet up and share those experiences with others, so to that end we have KIT type lunches. As we are all spread out across the UK another of our aims is to provide or create regional KIT meetings that are easier to get to for the majority. To date we have had meetings all over the country including Scotland and Wales
To achieve these goals we intend to further open the MFSN as a “membership”, from where it currently sits only on Facebook, and where you will all have a chance to participate and guide the group in the direction that you and we would all want, perhaps becoming a committee member should you wish. Establishing funds to help us in our goals is/will be a part of our objective, currently the majority of funds we hold have been provided through the connection of two of our committee members with a golf club and its members, who so far have held three fund-raising events on our behalf.
We encourage you to participate with us and establish a support community for Myositis here in the UK.