Connecting Myositis patients, their families and friends throughout the UK
6th November 2019
It is with immense sadness that the Committee announce the death of Christine Nixon this morning. Her beloved husband and family were with her while she peacefully passed. She touched many peoples’ lives and was a mentor/friend/confidante to so many in the Myositis world. A very caring and compassionate lady, irreplaceable.
Welcome to the website for our group, the Myositis Friends Support Network (MFSN). Our hope is that together with our Facebook pages and Keep in Touch meetings (KIT) 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 thought you might like to have a little background information on the people behind Myositis Friends Support Network, our aims and vision for the group.
The group was originally started in 2014 by a handful of Myositis patients who had met at a Conference but felt more support for the individual was needed. It was led by Dave Wood who inspired the rest of us with his passion for a support group that would be easily accessible to most people. Just before the MFSN Facebook page was launched, Dave unfortunately died quite suddenly. We floundered for a while until Richard Tear (a non Myositis) stepped in to steer the ship, so to speak. We are very grateful to Richard for his input particularly at that time.
Despite one or two hiccups along the way, we have now grown to 325 members and opening 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 (as we are called) now consists of Carol Dawkins (Chairman), Rod Allen (Treasurer), Val Foreman (Secretary), Christine Nixon, Patsy Pringuer and Margaret Allen. Previous committee members have been Joy Walker, Isobel Sutcliffe, Richard Tear and David Morgan who had valuable input. We keep in touch by email, telephone and once a month have a Skype chat where we exchange thoughts and ideas.
We have a small kitty which is held by Muscular Dystrophy UK and any expenses or gifts are made from this account. Rod and Richard have been the main fundraisers holding 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 e.g. flowers to members having a tough time. We would like to be able to help members financially in purchasing items of equipment when funds are at a sufficient level.
We also require help both financially and practically to update and improve the 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.