Chair-person
Contact us to register your interest fshgroup@hotmail.com

Vice-chair - Andy Findlay

I was diagnosed with FSH in 1985 although I knew something was wrong from quite an early age. I managed to stay working until I was 56 when I developed epilepsy which made my FSH worse and I started to use a wheelchair. I now use an electric wheelchair as I cannot self propel very far.

Once I finished work I became involved in several organisations on a volunteer basis and now work for Citizens Advice Bureau as a generalist adviser, I am a representative for Derby City council to East Midlands Older Persons Advisory Group (EMOPAG) where I am secretary and therefore attend meetings to the UKOPAG and I have also become involved with the East Midlands Later Life forum. I am a representative for MD on the Disabled Persons Diversity Forum (DPDF) in Derby and I am campaigning for an East Midlands Muscle Centre with the help of the MDC. I have been involved with the Support Group from the very first meeting in London when it was set up by the hard work of Lorraine Jonas.

Treasurer - Moira Findlay

I am Andy’s wife and carer. I worked until Andy became dependent on a wheelchair and I took early retirement to look after him, although I had been doing quite a bit of caring before this! When I finished work I became involved, with Andy, in quite a few things and became treasurer of two organisations prior to becoming treasurer of the support group. I have been involved with the support group since it was originally set up and have seen it develop and expand over the time to become what it is today. I look forward to continued working with the group.

I am now 46 and still managing to get around under my own steam indoors but use a wheelchair when out. I am studying Graphic Design at the NMC which I am really enjoying. I like to challenge myself as much as possible and have recently done a sponsored paraglide. Things are getting harder but for now I’m just taking each day as it comes.

Minute Secretary - Shona Crump

Hi. My name is Shona and I'm 43 years old and married with 2 children. I have been involved with the FSH support group for many years, first becoming involved through my parents Andy & Moira, who are also on your committee.

I was confirmed through a blood test around 8 or 9 years ago as having inherited the faulty gene for FSH from my father but according to my consultant I am fairly unique as I don't actually show any symptoms yet. I do however also have Myasthenia Gravis, which is another neurological condition that causes muscle weakness and tiredness and I take a bucket full of pills for that, but that's another story!!

I would recommend anyone with any questions regarding FSH to come along to one of our get togethers. You will meet many other individuals with varying degrees of FSH and usually someone will be able to answer your questions, or will know a man who can!

Family Representative - Tracy Surgeoner

Hi I'm Tracy Surgeoner and I am delighted to have joined such a pro-active body.

I am married and have two children Josh 14 and Emily-Jane just turning 3. We live a hectic lifestyle keeping ourselves very busy, taking part in everyday life, you know, shopping, school, toddler swimming, teenager sports and social calendar, husband's activities, the usual.

Since my twenties I have been active in campaigning and supporting equality for Disabled People, with committee involvement with a number of projects over that time, and now whilst mainly concentrating on family life I am hoping to bring my enthusiasm and experience to the FSH group and support its continued new success and popularity, as I believe supporting each other both socially and in our coping strategies is an essential part of living with MD.

Members' Representative - Jason Baxter

I am 43 and live in Burton on Trent in East Staffordshire where I have lived since 1988. I have an 18 year old daughter. I was diagnosed with FSH-MD in 2003. I'm 1 of 4 people in my family that have FSH-MD. I have muscle weakness in my upper arms, stomach, hips and upper legs. I have had scapular fixation on both my shoulders. My first operation in October 2005 and second operation was in May 2006.

I am employed by Derbyshire County Council and have worked there for 19 years. In my work I have been involved as a Trade Union Rep, so I am very familiar with how committees are run and not scared to ask questions. I'm involved in the West Midland Muscle Group that meets every three months to petition for improved services in the West Midlands.

Website Coordinator - Neil Withers

I am a 37 year old graphic designer living and working in London, I have my own company www.withdesign.co.uk and have worked for many high profile clients like Manchester United Football Club, Britvic Drinks, Vodafone and PCWorld. I play bass guitar, I also draw and paint. I love heavy music and would be lost without my iPhone. I'm single at the moment (hint hint any pretty ladies out there). Apart from being a fairly dysfunctional adult, I also have FSH & use a wheelchair.