Our Conference 2005 took place on Saturday 4th June at The Park Hall Wythall Community Centre Wythall Park Silver Street Wythall Birmingham.

Our new Chair Sheila Hawkins welcomed us all and thanked Martin Fielden for his past four years as Chairman.

Sheila was diagnosed with FSH in 1989. She has been a member of the support group for the past 15 years and has always found the support group to be very helpful.

Our group currently has 334 members, ten joined in 2004 and seven in 2005.

We gain visitors from all around the world looking at our website. Approximately 400 visitors per month, the message board, conference notes and newsletters have the most hits. Sheila would like there to be more interaction within the group ie. members attending meetings on behalf of our group and reporting back to us.

Our Group Member Colin Lucas will update the group on reasearch and his notes and information will be uploaded on to the website.

Sheila introduced Eva Wall the information officer from the MDC. She explained that the information officer is responsible for publication of the fact sheets and adding information on to the website. She works with the funding department to get money for new materials. Open Monday to Friday 09.00 - 17.30 . Professionals contacts email electroic material to her for distribution.

The Care network includes physios, occupational therapists health professionasl.

North star project is a physio network. Website - all publications on a search engine, includes online sessions and an information day on the website.

The rest of the morning session was taken up by a very interesting, informative and amusing lecture by Professor George W Padberg who had flown in specially from the University Hospital at Nijmegen in the Netherlands to bring our members up to date with current research into FSH Dystrophy, in Holland.

He explained that the research into FSH is very compliated and is being carried out worlwide. The genetic problems with FSH are interesting although progress seems fast for researchers it is slow for patients.

Research is being carried out into the gene involved but the diagnostics are complicated. FSH affects the upper extremities.

One third of all gene carriers not many show symptoms.

He then gave some interesting information regarding research and statistics:

Symptoms

Pain = 75%
Articluation problems unknown - speech therapist recognise there maybe misuse of labial tissue.
Swelling - 5 / 10% of people have problems.
Respiratory insufficiency - very rare = 1% . It is felt that Wheelchair dependant patients should have annual respiratory checks.
Stem cell - do not know genetic mechanism. Research is now looking at satelite cells not weak comparing to those that are weak and they will try to implant not weak cells into weak cells and produce a report on their findings.

Results are awaited from a pilot study on calcium in the USA .

Albuteorol trials - Carried out in the USA in 1998 - disappointing results. Grip strength improved. No affect on main points decision made not to prescribe Albuterol.

Trials going on in France at the moment.

Exercise per individual not to overdo Physio is useful.

Steroids - no affect do not advice.

No special diet - just eat healthy.

Balance/strength problems most people manage to compensate with their walking.

Link to epilesy and FSH - not evident - unlikely.

Can carry gene but have not symptoms next generation can be passed on.

Pre natal diagnosis is available on the placenta at twelve weeks and they can then make a diagnosis. Pre conception cannot make diagnois, it is nOt recommeded as risks making false diagnosis.

How much research can be shared? there is much collaboration worldwide. Dutch funding comes from the Princess Beatrice fund.

MD USA - Special FHD founation helps funding some paid by university.

There are plans for the MDC to be asked to assist with funding in Holland.

Richard O'Neil was being funded to look at the under expression of muscle growth but the grant was not upheld.

Can take up to 4 years for research results.

The Professor explained much more in great detail with the use of a powerpoint presentation, we have asked for a copy but have not yet received the presentation.

We then had a question and answer sesssion.

The Professor spoke for over three hours, Sheila thanked him for coming over from Holland to speak to us.

We then had a lunch break.

After lunch Sheila introduced Charlotte Elsworth and Helen Dawes who explained their research into the effects of Physiotherapy on people with MD, and demonstrated their "GAIT" measuring system, which was tested by some of our members.

The last session of the day was a discussion group.

We heard about the Derby pilot groups that are making Doctors more aware of rare conditions. It would be a long term wish that one day Physios could put together specific exercise programmes,that medical rehab would be available in all hospitals that all our members could go and see a physio.

The "Expert Patients Programme" was discussed.

Sheila mentioned she received a range of invitaitions she is not always able to attend these and would ask for some volunteers to attend on the group's behalf

Health care serivce serivces deliverd by NHS hospital - still very much a post code lottery. We should all try and collect email addresses.

Welcome new members, some people are very isolated and a visit from another member in the area would help.

We should all ask our own GP if anyone else in the area with FSH could be contacted by us.

The Conference ended at 4.30 pm.