Chair-person - Karen Bayliss

I'm a full time electric wheelchair "pilot" and I have FSH-MD which is a total pain...literally, but I still attempt things I shouldn't so tend to spend a lot of time hitting the floor...ouch! I was diagnosed in my early thirties, but like many I'd had symptons from early childhood. I retired from work sometime ago but I'm keen to actively support campaigns that improve services and facilities for those of us who have a neuromuscular condition.

The great loves of my life are my three retired ex racing greyhounds, Boogie, Fletcher and Ebony. I support the Retired Greyhound Trust who spend so much time rehabilitating these beautiful animals to enable them to find loving homes to live out their retirement.

Vice-chair - Andy Findlay

Write up to follow....

Treasurer - Moira Findlay

Write up to follow....

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!

Young Person's Representative - Laura Bayliss

My link with FSH-MD is through my mother, who was diagnosed with the condition when I was about 9 years old. As yet I am unaware if I too have inherited the condition which also affected my grandfather and his immediate family.

Now 25, I am a registered staff nurse working in Birmingham. I love mountain biking, swimming and have been known to run the odd half marathon for charity. I also enjoy walking the families three retired greyhounds and fundraising for MDC, Asthma UK and the Retired Greyhound Trust. As the young persons' representative I hope to be a point of contact for younger members, as well as organising social events and bringing new energy to the support group.

Family Representative - Tracy Surgeoner

Hi Tracy Surgeoner here. I am the newest member of the FSH MD Peer Support Group Committee 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.

Members' Representative - Cynthia Hale

My name is Cynthia Hale. I'm married with four grown up children and seven grandchildren. I live in Droitwich with my husband and three assorted dogs! I'm a lay minister of the Church of England. I studied Theology at Birmingham as a very mature student and am currently studying part time for an MA with Oxford University Continuing Education. Dept.

I love theatre, wining and dining, reading, holidays and days out and meeting up with friends. As a members' rep I'm primarily interested in ensuring that as a group we can offer advice and friendship to our members. Please don't hesitate to contact me if you'd like to talk about anything that might be of concern to you - I am a good listener!

Members' Representative - Les Sutton

I'm genuinely interested in people, I'm very approachable and have good communication skills.
I manage my own support package and have been providing support to other people to manage their own packages for approximately 12 years. I have a background in voluntary organisation run by disabled people and statutory organisations.

I'm a strong advocate for independent living and believe that given the right support everyone can make their own choices to be in control and achieve their own outcomes.

I have FSH-MD as do other members of my family, I have a positive outlook on life and live it to the full. I believe that before we can remove the barriers in the community we must first remove the barriers within ourselves.