Board of Directors

Chair

Mrs Margaret Bowler SRN SCM

In 1985 my husband and youngest son were diagnosed with Myotonic Dystrophy. My desire the was to find another family with the condition. Eventually this led to the formation of the Myotonic Dystrophy Support Group. 25 years later the caring organisation for families that I started has become a Registered Charity and had 1800 families on the mailing list. I give support with the helpline,the office and the literature. I travel in the UK and abroad to tell others about how Myotonic Dystrophy affects Families. I have received several awards for the work done. I will continue to do all I can to make the condition known to agencies and medical professionals.

Vice

Chair

Mrs Elycia Ormandy

A founder member of MDSG, I have been privileged to serve on the committee since 1990. I bring to the MDSG members a sense of history of the growth of the Group, and the benefit of years of meeting with, and learning from, clinical and research professionals at national and international meetings.

As a Trustee I am involved in leading the MDSG forward as a caring and family/individual oriented organisation.  As vice-chair I represent MDSG at meetings, as delegate or speaker, take calls on the MDSG telephone Helpline, am the Contact Person for Manchester, the northwest and north Wales. I am Editor of the MDSG Newsletter, and assist MDSG in any capacity as required.

Mr Christopher Bruce-Jones BA FCIB

Retired bank general manager with experience in finance, administration and human resources. For twelve years was a trustee (latterly Deputy Chairman) of Christ's Hospital, UK's largest educational charity (net assets £250m), providing subsidised boarding education to 830 children according to need.  Married, with three children and eight grandchildren. A daughter and a grandson have Myotonic Dystrophy.

I am also the Web Editor for the Myotonic Dystrophy Support Group Website.  webeditor@myotonicdystrophysupportgroup.org

Mr Dafydd J Williams

I first found out about the Myotonic Dystrophy condition in 2005, which my partner suffers from. I had never before heard of it, and did not understand what it was all about until I attended the conference in Milton Keynes with Samantha.  After that I was more aware of what the condition was about. I could see how important a support group was to sufferers and their families.   

I have a HND & BA in Media, Design & Communication and have technical experience having worked in the Television and Theatre industry for many years and now do free lance work when I can. For the past years I have set up and run the technical side of the conference (audio, visual and lighting). I am currently training to become an electrician.

I am also very involved with the company website and early 2010 became Website manager. webmaster@myotonicdystrophysupportgroup.org

 Mr Ken Ford

With my wife I have been a member of the MDSG for 18 years, becoming aware of the Group when our son was diagnosed at the age of 14.

I was a paramedic for 17 years before an infection caught from a patient left me hospitalised and permanently disabled. Following medical discharge from the Ambulance Service, I have worked with the Citizens Advice Bureau and the Benefits Agency and now with the British Red Cross.

As a result of these activities I have acquired good listening skills, and with the personal experience of DM in my own family, I can offer help in relieving some of the difficulties encountered by DM families.

I was diagnosed with Myotonic dystrophy type 1 in 2006.  Since then my husband and I have had 6 cycles of pre-implantation genetic diagnosis (PGD) and two of those have been successful  I now have a healthy son and another baby on the way.  Most of my working life is spent doing statistical analysis for big companies (usually banks).  I also have a second business as a property investor and am the Sheffield representative for the National Landlords Association, where I organise landlord meetings and give talks to other landlords.  I believe many skills that I have learned from my business life will benefit the MDSG and I will enjoy helping other families who have Myotonic dystrophy.

 Mr John Kelly OBE

The brother of our daughter-in-law was diagnosed with DM in 2004. This made “bells ring” regarding the state of our two grandsons, then aged 5 and 4, about whom we had had concerns since their birth, and so it transpired that they had been congenital babies.

Our son was a founding Board Member and is now the Chairman of the Myotonic Dystrophy Foundation (MDF), the MDSG’s sister charity in the USA. We have attended IDMC-5 (Quebec 2005), IDMC-6 (Milan 2007) and IDMC-7 (Wurzburg 2009).

I and Sue have raised, and will continue to raise, funds for research in the firm belief that a therapy, and eventually a cure, will be found for DM. Meantime by fund raising we are already helping to spread awareness and we would also like to offer help and encouragement to those who suffer.

I am also a lay member of the Muscular Dystrophy Campaign research panel.

In my working life I served 42 years in the Royal Navy,retiring as a Commodore.

Dr Margaret Phillips

Dr Margaret Phillips worked for 3 years in the Institute of Medical Genetics, Cardiff, studying Myotonic Dystrophy. Her skills and experience include seventeen years of working with people with Myotonic Dystrophy, being a consultant and Associate Professor in Rehabilitation Medicine, a trustee and medical advisor for the MDSG and Lead Clinician for Rehabilitation Medicine at Derby Hospitals Foundation Trust.

Mrs Sue kelly

I am the mother of 3 and the grandmother of 7, and taught dance for  30 years.  Like my husband, John, I had no   knowledge of Myotonic Dystrophy until our daughter-in-law and, subsequently, our two  grandsons were diagnosed with the condition.  In the succeeding  years I have channeled my
energies into raising both funds and awareness, and we are now MDSG Contact people in our area.

By 'going public', support has come our way for the many fundraising events with which we have been involved. I am delighted to be a  Director of the MDSG.

Mr Michael Walker

I have been involved with the Myotonic Dystrophy Support Group for many years, assisting and printing all the leaflets and newsletters. My wife and one of my sons have the condition.