Our Annual Conference 2003 was held on Saturday 31st May the Orbital Centre, Garston, Watford, Herts.

We had an attendance of 50 of our members on what turned out to be the hottest day in May on record! It has been decided to hold our annual meetings earlier in the year, rather than October, so as to take advantage of the longer days and better weather.

Martin Fielden, our Chairman has been re-elected as a National Trustee of the Muscular Dystrophy Campaign and is on the Medical Research Committee.

Our first speaker was Dr. Richard Orell BSc MD FRCP, Senior Lecturer and Consultant Neurologist, Royal Free Hospital Hampstead.

He proceeded to give us a power point presentation on FSH and then explained how they carried out a nerve conducting study and DNA blood tests. The laboratory findings and the FSHD genetics and showed graphs showing the genetic changes. in FSHD. In 1990 the FSHD chromosome was found. They found the same information on Chromosome 4 and 10.

He explained about the Mechano growth factor, formed in muscles in response to exercise. As part of a trial, MGF was introduced into mice there was a 25% increase in the muscle cross sectional area over a two-week period.

After lunch Terry Robinson and Martin Chainani, Family Care Officers employed by the Muscular Dystrophy Campaign explained that they are part of a team of 15 FCO’s spread over the UK.

They offer an information service and can provide practical and emotional support for FSH patients and their carers. They try and build relationships with families and professionals. They have around 800+ clients to look after. They educate the professionals and deal with anything including non-medical issues. They work closely with Neurologists. There are three muscle centres: Oxford; Newcastle; Hammersmith; together with a Scottish and Welsh network.

Q. How can we find our nearest FCO
A. Call the MDC in London or alternatively the support group sends out a list with each welcome pack.

They discussed the Disability grant and the new rules for Local Authority grants. By July each Local Authority must have a definite policy. Terry said each applicant should allow between eighteen months and two years.

Equipment – ask for help with the purchase of equipment - The Patrick Memorial Trust is a charity that will look at contributing to the purchase of equipment not covered by Statutory Services; also local Rotary Clubs and Lion Clubs are also happy to assist with part funding.

Disability living allowance – seek professional advice before completing the form.

Everyone should be aware of the Access To Work Scheme.

House adaptations – there is a list of approved Architects across the UK available from the MDC.

Our next speaker was Kevin Asheton who explained The Alexander Technique.

Kevin explained how Frederick Mathias Alexander founded the technique as a means of self-help for himself.

The Alexander Technique is a simple and practical method for self-improvement and self-help. Anyone can benefit. It is a method of mental and physical re-education which has the effect of reducing unnecessary tension in all human activity.

The Alexander Technique is taught through one-to-one lessons with a qualified teacher. The number of lessons you take will depend on your particular needs and goals, and these can be discussed with your teacher. Alexander teachers although highly trained are not medical advisors and do not make medical diagnoses. A course of 20 to 30 regular lessons can provide a good foundation for on-going self-discovery for most people.

Throughout the day there was a display of 4 wheeled walking aids by Nordic Care Services.

For a full report on this Conference please choose Newsletter 8 from our main menu.