1
Welcome
We would like to invite you to attend the Myotubular Trust's third European family
conference in London on Saturday 12th July 2014. Check-in will be from 9.00am for a
9.30am start. The Conference is free-of-charge, and provides a unique opportunity for
you to meet other affected families and individuals, hear from the leading researchers in
our field, and discover some of the latest ideas about how to manage the condition. We
welcome anybody whose life has been affected by any form of myotubular and
centronuclear myopathy.
Please Book Soon If Attending
1. Complete the booking form below (page 2) and return to us by post OR email
2. Book online http://www.hilondonbloomsburyhotel.co.uk/bedrooms/ When booking, the
code ZT5 must be added in the 'Corporate ID' drop down. You can book accommodation
with the hotel directly, by calling the Holiday Inn on a freephone 0800 40 50 60 quoting
the code ZT5. International dial in +44 871 942 9222. (Details of our special negotiated
rates, and details about rooms can be found on the booking form).
Conference Venue and Accommodation
The conference is being held at the Holiday Inn, Conrad Street, Bloomsbury,
London, WC1N 1HT
If you would like to stay overnight at this hotel, we have negotiated special conference
rates of £155 per room per night, including breakfast, for two people sharing a twin or
double (or £145 including breakfast, per person, per night on a single-room occupancy
basis). This rate applies for both Friday and/or Saturday nights.
Please note that there are some disabled accessible rooms which interconnect with
double rooms, and there are also some larger family rooms. These have been held
aside for individuals or families with additional needs and can be booked on a first-comefirst-served basis. You can also arrange for a portable lifting hoist with the hotel, and one
room has a ceiling track hoist. Adult guests should please make any requests for a wide
access bathroom or bedroom with the hotel, so that they can reserve the most suitable
room for your needs.
Travelling to London
For travel advice on how to get to London see the Visit London website
http://www.visitlondon.com/traveller-information?ref=nav . If you plan to bring your car,
there is 24 hour parking beneath the hotel (£12 for 12 hours /£15 for 24 hours). There
are all day disabled parking bays for blue badge holders directly outside the hotel in
Conrad Street and in nearby streets.
We look forward to seeing you!
Registered Charity No. 1137177
www.myotubulartrust.org
2
Family Conference, Saturday 12th July 2014
BOOKING FORM
Please read the notes below before completing, signing and returning the booking form
to us. Please ensure you reply to all the questions (where applicable) and complete the
declaration and signature sections. We will send you a confirmation upon receipt of your
booking form.
I/We require ______ number of adult tickets for the Conference
I/We require ______ number of places in the Crèche
I/We require ______ number of places in the Teenage Programme
I/We require ______ number of places for Adult Carer(s) accompanying us
Total number in your group ______
* Please note, due to limited number of spaces in the Conference, we respectfully ask that
teenagers and children 12 years and under join our Teenage Programme and Crèche Facility.
If any children over the age of 12 would prefer to stay in the Teenage Programme, please feel
free to book them in, even if they only wish to do so for part of the day.
Contact details
Please specify the details of the person making the booking here:
Name
Address
Postcode
Email
Daytime tel
Mobile no
Wheelchair user?
Has MTM / CNM?
If YES please provide details
Lunch required on 12th?
Supper required on 12th?
Please specify any special dietary
requirements
Please specify if there are any other
special requirements – such as
changing room/shower etc
YES / NO (delete as necessary)
YES / NO (delete as necessary)
YES / NO (delete as necessary)
YES / NO (delete as necessary)
Registered Charity No. 1137177
www.myotubulartrust.org
3
Other adult members of the group, attending the conference
Please complete the following information for every other adult who is attending, including the
details of any carers (if more than one other person is attending, copy and paste the box below
and complete as many times as necessary).
Name:
Booking required
Wheelchair user?
Has MTM / CNM?
If YES please provide details
Lunch required on 12th?
Supper required on 12th?
Please specify any special dietary
requirements
Please specify if there are any other
requirements, such as changing
room/shower etc
Conference / Carer (delete as necessary)
YES / NO (delete as necessary)
YES / NO (delete as necessary)
YES / NO (delete as necessary)
YES / NO (delete as necessary)
Children attending as part of your group
Please provide the details of children who are part of this group booking. Please complete the
information below for every child who is attending (if more than one child is attending copy and
paste the box below and complete as many times as necessary).
Full Name
Nickname
Age
Specify your relationship to this child
Booking required (we respectfully ask
that no child under 12 attends the
conference)
Wheelchair User?
Has MTM / CNM ?
If YES please give details
Feeding Needs / Allergies
Lunch required on 12th?
Supper required on 12th?
Please specify any special dietary
requirements
Drinks
Parent / Legal Guardian / Carer
Conference / Teenage Programme / Crèche (delete as
necessary)
YES / NO (delete as necessary)
YES / NO (delete as necessary)
YES / NO (delete as necessary)
YES / NO (delete as necessary)
Does your child understand spoken
English?
If NO please specify your child’s first
language
Instructions for personal care (eg nappy
changes)? Note: You can request to be
called out of the conference.
We will provide fresh juices, water, tea and coffee during the
day. Please bring other drinks with you.
YES / NO (delete as necessary).
Registered Charity No. 1137177
www.myotubulartrust.org
4
Will you bring specialist equipment with
you, such as ventilators, suction
machine etc?
YES / NO (delete as necessary)
If YES please specify the equipment you will bring here:
Seating and positioning needs
If your child requires regular medication,
attention or treatment, are you providing
a Carer for your child?
If YES please specify Carer’s name and
ensure that you have provided Carer’s
details above in the “other adult
members in the group” section
Any other special requirements or
information you feel would be helpful for
the crèche staff to be aware of
YES / NO (delete as necessary)
Carer’s Name:
Other information
Please add any other information that you think will be helpful to us
Crèche and teenage programme
Our crèche and teenage programme is being led by a qualified and experienced crèche and
child-care coordinator, along with her experienced team of volunteers.
The children and teenagers will participate in creative activities and entertainments during the
day. The crèche and teen programme will be located immediately next to where the conference
is taking place.
Under 12’s are free to join the conference, but we will have creative activities and games and
movies available in the teenage programme, should they wish to make use of them.
The crèche will be closed at the end of the conference at 1745, after which a buffet supper will be
served from 1800 to 1930.
We welcome carers to attend the crèche/teenage programme with any child(ren) who require any
special care or who need translators. If you are bringing a carer to the event, please ensure they
have been included in this booking form.
Registered Charity No. 1137177
www.myotubulartrust.org
5
Your feedback about children’s activities:
Please provide us with details of any interests or activities your child might enjoy doing, for
example magic making, balloon modelling, face-painting, story-telling, films, dance/wheelchair
dance, music-making, arts and crafts, games consoles etc
NB, please note that we may use latex balloons in the children’s crèche/teenage programme, so
please advise here if your child has sensitivity to latex. Please reassure your child the balloons are
the type that deflate slowly/quietly.
(Optional) Further medical information and doctor’s details
Please complete the information below for every child who is attending (if you would like to
provide the medical information for more than one child who is attending please copy and paste
the box below and complete as many times as necessary).
Child’s name
Home address
Home telephone number
Name of doctor
Surgery address
Telephone number
Known sensitivities / allergies*
Existing medical condition (s)
Regular medication(s)
Parent(s) or Guardian(s) day time contact details
Name:
Relationship to child:
Mobile no:
Registered Charity No. 1137177
www.myotubulartrust.org
6
Terms and conditions:
1. The Myotubular Family Conference is free of charge to you and your group. You
will not be charged for the crèche / teen programme, lunch, dinner or
refreshments during the conference on 12th July.
2. You are responsible for booking and paying for accommodation, travel and any
subsistence outside of the conference on 12th July.
3. You will notify us immediately if you or any member of your group are unable to
attend, so that your space can be offered to another family or affected individual
who would like to attend.
4. Myotubular Trust will not be providing medical or other advice and they will not be
responsible or liable for any action taken by participants as a result of any
information provided at this conference.
5. The conference crèche staff will provide your child with professional play
supervision throughout the day and can quickly contact you from the adjoining
room in the unlikely event that there is a problem. The creche is situated next
door to the conference room and if your child requires urgent medical attention
we will call you. If you are not in the conference room, we shall be authorised to
make the decision on your behalf should consent be required for urgent
treatment.
However, the Myotubular Trust will not be able to provide one-to-one nursing
care for children with more complex medical needs and who require regular
suctioning, g-peg feeds, regular medication, moving and handling or personal
care. We respectfully ask that children who require a higher level of supervision,
attention or care are accompanied at all times by a responsible adult or carer, or
you speak with us to help you make special nursing care arrangements.
6. You are responsible for your own property, and any equipment or medication you
bring to the conference.
These terms and conditions are governed by English law.
Registered Charity No. 1137177
www.myotubulartrust.org
7
Declarations
I give my consent for the above named child / children to take part in the
activities provided by the Myotubular Trust childcare team:
YES / NO (delete as necessary).
I give my consent for a qualified member of the team to give my child first aid treatment:
YES / NO (delete as necessary)
I consent to the terms and conditions outlined above:
YES / NO (delete as necessary)
…………………………………………………….
Signature (I accept the terms and conditions)
If you are bringing a child to the Myotubular Family Conference, this section must be
completed by the child’s parent or legal guardian.
Name of Child or Children
………………………………………………………………………………………………..
Signature …………………………………………….…………………………………………
Name (please print)………………………………………………….……………………………
Parent or Legal Guardian (please delete as appropriate)
Date…………………
Please complete and return this booking form by email to
familyconference@myotubulartrust.org
Please return by post to
Melanie Spring
Myotubular Trust
15 Poulton Avenue
Sutton
Surrey
SM1 3PZ
United Kingdom
Bookings will be accepted on a first-come first-served basis and, to avoid
disappointment, we strongly recommend you return the completed booking form as
quickly as possible to ensure that your places are secured in the conference/crèche and
teenager programme. To avoid any embarrassment, please do not turn up without
booking, as there is a restricted number of spaces available in the conference and
crèche facilities.
Registered Charity No. 1137177
www.myotubulartrust.org