I’d had symptoms for about 10 years – dropping things, being clumsy, gaining weight, and becoming tired quickly. I then started noticing that symptoms in the left side of my body were worse than on my right side.
The MSFN was originally started in 2014 by a handful of people with myositis who had met at a conference but felt more support for the individual was needed. Dave Wood led the network and inspired the rest of us with his passion for a support group that would be easily accessible to most people. Just before th MFSN Facebook page was launched Dave died quite suddenly. We floundered for a while until Richard Tear, (who does not have myositis) stepped in the steer the ship so to speak. We are very grateful to Richard for his input, particularly at that time.
Despite one or two hiccoughs along the way, we have now grown to 411 members, and limiting the group to just UK residents has kept it small and friendly. We have been able to enjoy several meet-ups around the country and have had some really interesting speakers.
The committee now consists of Carol Dawkins (Chairman), Rod Allen (Treasurer), Val Foreman (Secretary), Patsy Pringuer, Margaret Allen and Alison Farrar. We’re grateful to previous committee members, Christine Nixon, Joy Walker, Isobel Sutcliffe, Richard Tear and David Morgan, for their valuable input.
We keep in touch by email, telephone and, once a month, have a Skype chat where we exchange thoughts and ideas. We also have a thriving Facebook community: www.facebook.com/groups/1068402266518606/
We have a small kitty, which MDUK holds, and any expenses or gifts are made from this account. Rod and Richard hold an annual Charity Golf Day; donations from individuals and the EasyGiving shopping page have also contributed to this fund.
What do we spend the money on? Meet-ups at various venues, gifts, such as flowers to members having a tough time. We would like to be able to help members financially in purchasing items of equipment too, when funds are at a sufficient level.
We also need help both financially and practically to update and improve our website. If anyone has any ideas or skills in this area, we would love to hear from you.
We are also open to welcome new committee members so if you feel you would like to join the “team”, let us know.