Details:
We are pleased to invite you to our conference, to be held on Saturday and Sunday, 6 and 7 June 2009 at the Park Inn Hotel, North Street, York. The Conference Programme and Booking Form are available as PDF documents you can download and print.
We have made the weekend as varied as possible, with an emphasis on the management of Duchenne muscular dystrophy and coping with the practicalities of day to day living. On Saturday, the day will include a presentation on the latest research and the progress of clinical trials, plus information on the planned new Neuromuscular Centre at Newcastle. Some of you may know that there is already a Centre at Winsford in Cheshire, where people with muscular dystrophy can have access to specialist physiotherapy. They also run a successful graphic design business staffed almost exclusively by people with muscular dystrophy. On Sunday, you will have a chance to see demonstrations and talks by various equipment providers, including what we hope will be the highlight of the morning, a presentation and demonstration by Dogs for the Disabled. Luch is at 12.30pm on Sunday and then depart home.
If you are a manifesting carrier, Vanessa Pegg and Molly Martin – who both live in the Bristol area and are themselves manifesting carriers – plan to come to the conference and will be running an informal discussion group.
Workshops (Saturday)
To help you decide which workshops you would like to attend, we are able to provide the following brief information. All the workshops will give you an opportunity for discussion of the issues addressed, and to offer your own experiences and to ask questions.
Benefits
Sarah Rush, Head of Advice at Contact A Family, will explain what benefits families affected by Duchenne muscular dystrophy could be entitled to, including direct payments and an overview of the Independent Living Fund. Sarah will be unable to give personal advice on the day, but will be able to put you in contact with an advisor.
Post 16 Education
Simon Brown and Angus Collins from the Victoria Education Centre in Poole, Dorset will talk about how their school could be an option for young people with DMD at will look at residential and day options, as well as comparing mainstream school with special schools.
Respite Care
Helen Garford and Nicola Kinlin from Demelza House Children’s Hospice in Kent will explain how you can refer your child for a place in a hospice and talk through the emotional and practical implications.
Physiotherapy and Respiratory Care
Lindsey Pallant, Senior Physiotherapist with the Neurmuscular Care team at Leeds General Infirmary will talk about physiotherapy and its part in the management of Duchenne muscular dystrophy including the use of steroids. She will also cover respiratory care and demonstrate the use of ventilation machines and cough assist machines.
Download the full conference details
PDF Conference Programme details (PDF)
COSTS
We are able to offer the following subsidised rates for family members of the DFSG. The costs are per person, including children aged 15 years and over, and are applicable to immediate family members only. Children under 15 years not sharing a family room will be charged half the subsidised rates stated below.
To attend the whole conference (including overnight accommodation) £65 (Child rate £32.50)
(A child under the age of 15 sharing a room with parents will incur a single nominal charge of £10)
To attend Saturday only, including dinner £35 (Child rate £17.50)
To attend Saturday only, excluding dinner £22 (Child rate £11)
To attend Sunday only, including lunch £15 (Child rate £7.50)
Child Care for under 13s will be available on Saturday, but not Sunday, at a nominal charge of £5 per child
Professionals and others who are not members of the DFSG will be charged as follows:
To attend the whole conference £120
To attend Saturday only, including dinner £ 65
To attend Saturday only, excluding dinner £ 45
To attend Sunday only, including lunch £ 30
If you also wish to stay on the Friday night, each individual will be responsible for paying for their room. We have negotiated a price of £99 per room bed and breakfast (double occupancy) or £89 bed and breakfast (single occupancy).
BOOKING AND PAYMENT INFORMATION
Please download, print and complete the PDF conference booking form
and then return it by no later than Tuesday, 5 May 2009 to:
Ann Patterson
DFSG Secretary
6 Laburnum Road
Sandy
Bedfordshire
SG19 1HQ
Please remember to enclose your payment. Cheques should be made payable to DFSG