Continue reading »]]> Join us on the 11th May 2013 for a FSH Information Day for patients and families living with FSH, organised by the FSH-MD Support Group UK and the Muscular Dystrophy Campaign.

This will be an opportunity to hear the latest updates in research, diagnosis and management of the condition from expert clinicians and researchers. Our guest speakers are:

- Professor Hans Lochmuller, Institute of Genetic Medicine at Newcastle University and co-ordinator for the FSH patient registry;
- Professor Jane Hewitt, University of Nottingham, who is working on a project to increase our understanding of the molecular mechanism behind FSH;
- Dr Fiona Norwood, Consultant Neurologist at King’s College Hospital, London

In the afternoon you will have the opportunity to attend workshops on: physiotherapy; changes to the benefit rules and how this affects you; and home adaptations and equipment. There will be an opportunity to meet other patients and families affected, with time to network, share experiences and find mutual support.

Maddy Rees, who has FSH muscular dystrophy, says:

“I’m really looking forward to meeting other people who are living with FSH. I hope that by attending an event like this for the first time I will be able to share my experiences and the things I’ve learnt, as well as getting support from the people I’ll meet.”

For this year the costs of the day will be met by the Muscular Dystrophy Campaign and our sponsors. The day will be held at Daventry Court Hotel, Sedgemoor Way, Daventry, Northamptonshire NN11 0SG, just off junction 18 of the M1 and close to the M40. For venue and location information please visit this website. Overnight accommodation on Friday 10th May can be booked directly with the hotel by calling 01327 307000 and quoting the Muscular Dystrophy Campaign.

To register your attendance, please complete the attached form and return to Muscular Dystrophy Campaign, Support Services, FREEPOST RRLK-LCZC-YLKH, 61 Southwark Street, London SE1 0HL. Email patientinfoday@muscular-dystrophy.org or call Adam on 020 7803 4800.

We do hope to see you there on the day.

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Cost £24 per person – includes a buffet lunch & break
plus free T-shirt, size dependant on availability

Saturday 30th June

10.00am – 4.30pm
Registration opens at 9.15, for a prompt 10am start
At Holiday Inn Walsall M6 Jct. 10
20 Wolverhampton Road West
Bentley, Walsall
WS2 0BS

Presentations • Research • Exercise • Nutrition • Physio

And Lots More
We Look Forward To Meeting You

For more Information Email; fshgroup@hotmail.com

Download your booking form

Continue reading »]]> We were delighted that the NHS took groundbreaking steps towards a national
neuromuscular service plan in discussions with members of the All Party Parliamentary
Group for Muscular Dystrophy at this afternoon’s session.Teresa Moss, Director of the National Specialised Commissioning Team, told MPs and Peers that it has been agreed that neuromuscular services will be a priority in the annual work plan of each of the ten Specialised Commissioning Groups across England.

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