Weekend Programme of Events

Welcome
to the
LMBBS Family Conference 2014
Hilton Hotel, Northampton
Information and Programme of Events
1
Contents
Welcome
3
Weekend Programme of Events
4
Conference Layout Plan
6
Creche Information
7
Drayton Manor and Bowling Information
8
Friends of LMBBS
9
Conference Speakers and Facilitators
10
Saturday Programme
16
AGM Agenda
18
Minutes of Last AGM
19
Weekend Menus
22
Delegates List
23
Evaluation Form
27
2
Welcome!
Welcome to the LMBBS Family Conference 2014; we
are delighted to have you with us for the weekend and
hope you have a fantastic time. Members who have not
previously attended our Conference will discover a
weekend packed with activities, fun and laughter, where
old and new members meet to share experiences and to
learn about the latest research,
all within this
wonderful Hilton Hotel setting, where we have held our
Family Conference for the past 15 years.
Inside this pack, you will find all the information you should need about
this very special weekend, however if you have any questions, don’t hesitate
to ask someone - we are a friendly bunch!
Please take the time to scroll through the weekend programme as soon as
possible to ensure you don’t miss out on any of the many activities planned.
We have many professionals attending for the weekend, including Ray
(benefits advisor), Annika (Psychologist), Sarah and Waseema (dietitians)
and Caroleen (Speech and Language) and they will be very pleased to chat
with you.
At the end of this pack is an evaluation form, which is vitally important in
the organisation of our weekend conference. We really want to know what
you think, what works and what doesn’t, to ensure that this valuable event
remains focused and provides you with the speakers and activities that you
want. All forms completed by 7pm Saturday, can be exchanged for a free
strip of raffle tickets.
All that leaves, is for me to say, have a fantastic weekend and make the most
of every minute; I look forward to meeting you all over the coming two days.
Chris
Chris Humphreys
Conference Co-ordinator
3
Weekend Programme of Events
Friday
From 3pm
Arrival and registration in Reception. If you wish to avail yourself of a
late departure on Sunday, please make the necessary arrangements
with Reception on arrival.
Free time to socialise or, for the more energetic, a visit to the pool or
gym
6.00pm to 8pm
Restaurant.
Evening meal (rolling service) will be served in Season’s
7pm-9pm
Activities and Games in the Watson Room
7pm-8pm
Ceramic Mosaic Crafts (for older teens/young adults and adults) in
the Lowther Room
7pm-9pm
BBS Resource Central in Collingtree 2: Including BBS Clinicians,
Benefits Advisor, Guide Dogs, Northampton Assoc for the Blind, Royal
National College for the Blind.
7.00pm
Families meet Creche Care Team in the Isham Room
7.30pm
Families meet Drayton Manor Care Team in the Spencer Room
From 8pm
Meet new friends and catch up with old: Steve Burge and Richard
Zimbler invite all adults affected by LMBBS to a reception in
Collingtree 1
8.00pm
Is this your first conference? Meet other BBS parents in
the Brudenell Room
9pm
Meet up with friends ‘old and new’ in the lobby/bar area
We are excited to present ‘BBS Resource Central’ in Collingtree 2 on Friday evening:
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Benefits Information and Support
Guide Dogs for the Blind
Royal National College for the Blind
Northampton Association for the Blind
Clinical Psychologist
Speech and Language Therapist
Transition Support for Young People
Food Tasting Session for Children/Young People
Understanding the Science behind LMBBS
Clinical Nurse Specialist
Ray Perry,
Maria Peploe,
Tim Broome
Annika Lindberg
Caroleen Shipster
Marie McGee
Sarah Flack/Waseema Azam
Dr Helen May-Simera
Kathryn Sparks
There will be an array of LMBBS merchandise, booklets and information available in
Reception throughout the weekend. There will also be a tombola and raffle tickets
available.
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Saturday
7.15am-9am
Breakfast in Seasons Restaurant (please note there will be an
additional serving point in Reception)
9.00am
Carers and those going to Drayton Manor assemble in Foyer.
9.15am
Coaches depart.
9.15am
Crèche opens in Isham Room
9.30am-4.45pm
Saturday Conference Programme in Collingtree
(see separate schedule)
11.30am
Carers and those going on Ten Pin Bowling trip to meet in the
FOYER
4.00pm
Carers and young adults return from Ten Pin Bowling
5.00pm
Crèche closes – please collect your child promptly.
5.00pm
Children and carers return from Drayton Manor.
6.30pm-8pm
Evening meal (rolling service) priority for carers, children and young
adults participating in evening activities, served in Seasons
Restaurant. Parents are asked to supervise their children for this
meal, allowing the Carers to have a much needed break.
7.30pm
Evening activities for children/young adults
Crafts, games, table football and snooker in Spencer Room.
Music Jamming Session in Brudenell Room.
7.30pm
Ceramic Mosaic Crafts (for older teens/young adults and adults) in
Lowther Room
9.00pm
Supervised activities for children/young adults end. Parents are
asked to take responsibility for their children please.
9.15pm
Famous Family Quiz in Collingtree with our quiz master Mark
Gibson, followed by the Grand Raffle.
11pm-late
Nightcap in the Lobby/Bar area
SUNDAY
7.30am-10.30am
Breakfast in Seasons Restaurant.
Free time to use the facilities of the Hotel, such as the gym or the swimming pool, before
your departure.
5
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Creche Information
General
Tonia Hymers is organising the crèche. If, after reading the following information, you have any
questions about childcare arrangements, Tonia can be contacted on 07805 685342.
The Creche Team should have a copy of an information sheet giving details of the children in their
care. Please make sure this has been completed and returned to ensure the best possible attention
can be given to your child’s needs.
There is a meeting at 7pm on Friday evening in Isham Room, for you and your child to meet the
care team who will be looking after your child on Saturday
Saturday Creche
The crèche opens at 9.15am - Please take your child/children to the Isham Room where the care
team will be waiting to meet you. Please register at Conference Reception first if you are attending
on Saturday only.
Please discuss any special requirements with the carers and ensure they have your current mobile
phone number on your child’s form; carers will advise immediately if a problem arises.
Squash, juice, biscuits and lunch will be provided where requested, however you are more than
welcome to take your child out of the crèche for a break, or to eat with you at lunchtime. Please
provide baby foods and other drinks if you prefer, labelled with your child’s name. It may be helpful
to leave a buggy and a change of clothes in the crèche. Toys will be provided but should you wish to
leave any special toys, please make sure they are also labelled.
The Hilton Hotel, Northampton recommends that children under the age of 12 should not be left
alone in the room.
A local babysitting service is available, please contact them directly if you wish to book their services:
Safe Hands: 0844 848 2810
www.safehandsbabysitters.com.
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Drayton Manor Park Trip and Bowling Trip
General
Julie Sales is co-ordinating the arrangements for those going on the outing to Drayton Manor Park or
Bowling. If after reading the following information you have any queries, Julie can be contacted on
07917 252585.
All members of the Care Team should have a copy of an information sheet giving details of the
child/young person or adult in their care. Please make sure this has been completed and returned
for your child/young person or for yourself as appropriate. This ensures that the best possible
attention can be given to the needs of all those on both trips.
Meet the Care Team
There is a meeting in Spencer Room at 7.30pm on Friday evening for all those going to Drayton
Manor Theme Park or Bowling.
Drayton Manor Park
8.55 – 9.00am – Make your way to Reception to meet your carer ready for a prompt 9.15am
departure. Please take this opportunity to discuss any special requirements.
As there are snack bars, ice-cream kiosks and gift shops at Drayton Manor Park, parents may wish to
give their child/young person some spending money. You may give this to the carer if you choose.
Outdoor clothing is recommended, particularly lightweight waterproof clothing for those intending
to venture on the wet rides! Since the group will be subject to the vagaries of British weather, it is
advisable to take warm clothing. If we are lucky to have a hot day, suncream will be a necessity.
Lunch and drinks will be provided, however you are welcome to provide your own food. Ever safetyconscious, LMBBS has booked a coach with seat belts for the journey to Drayton Manor Park.
The coach will arrive back at the hotel at approximately 5.30pm. We ask that parents be waiting
in Reception ready to meet their child/young person.
Ten Pin Bowling
11.30 am – Meet up with the Bowling Support Team in Reception; The team will be in reception
from 9.15am and activities and crafts will be available. If you would like to go swimming, or to the
gym, please discuss this with the care team on Friday evening.
We will have lunch at the local Toby Carvery, followed by two games of bowling at 2pm.
We expect the coach to arrive back at the Hilton Hotel at approximately 4pm.
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Thank You for your Support
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Conference Speakers and Workshop Facilitators
Claire Anstee
Parents Supporting Parents Workshop
I have been married to Jason for 15 years and we have three children,
James is 16, Emmy is 11 and Holly is 8. We live in a village in
Northamptonshire; I enjoy writing, reading and spending time with our
family and friends, holidays on the coast and walks around our local
reservoir.
We contacted the Society just as our daughter Emmy was being
diagnosed; the support we gained was amazing and made a huge
difference to us. Even though Emmy wasn’t formerly diagnosed at the
time, Jason and I went along to our first conference. Talking with Chris, Tonia and Julie that
first evening and listening to their experiences was like putting the last pieces of the jigsaw
together. We have been every year since and decided very quickly that we needed to give
support to the Society, as they had for us. We have held two fundraising walks so far and I
now provide support as the ‘New Families Contact’, via email, telephone, as well as at
conference in the New Families meeting.
Laura and I held our first ‘Parents Supporting Parents’ workshop at last year’s conference.
We hope to offer a friendly ear of support as well as to provide information that may be
useful and give positive experiences, in what can be a worrying and daunting time. I look
forward to seeing old friends and welcoming the new at conference.
Waseema Azam
Dietitian, Birmingham Children’s Hospital
Waseema qualified in 1995, gaining a Bsc (Hons) in Applied Human
Nutrition and Dietetics at Cardiff University.
In 1995, Waseema worked as a Locum Dietician in General Dietetics
at Singleton Hospital, Swansea, moving later to take a post as Basic
Grade Dietician, specialising in Diabetes and Gastroenterology at the
City Hospital in Birmingham.
From 1998 to 2009, Waseema held the post of Senior
Gastroenterology Dietician, specialising in Coeliac Disease and Upper
Gastro-Intestinal Surgery, moving to Birmingham Children’s Hospital in
2009 as Diabetes Clinical Specialist and Research Paediatric Dietician Specialist in the
areas of Diabetes and Bardet-Biedl Syndrome. Waseema is now full time Diabetes Clinical
Specialist and is the BBS Clinics Dietitian, working with the families who attend Birmingham
Children’s Hospital.
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Professor Philip Beales.
Institute of Child Health, Great Ormond Street Hospital and Guys and St.
Thomas’ NHS Trust
Professor Beales obtained his degrees in Genetics and Medicine
from University College London. He undertook postgraduate training
in both general medicine and paediatrics before specialising in
Clinical Genetics.
In 1999, he published the largest survey of LMBBS problems with the
help of members of the Society. This culminated in the identification
of a number of new features not previously described in the medical
literature and has helped Professor Beales to propose new diagnostic
criteria, with the expressed purpose of enabling an earlier diagnosis
in many children.
Also in 1999, Professor Beales, along with colleagues at Baylor College of Medicine in
Houston, discovered the first gene (BBS6) to cause LMBBS. Since then, at least 18 genes
are now linked to the syndrome.
Professor Beales is based at The Institute of Child Health/Great Ormond Street Hospital
where he heads the Cilia Disorders Laboratory. Together with collaborators from Europe and
North America, his group have made major advances in our understanding of the causes of
the syndrome. This includes the notion that abnormally functioning cilia (small finger-like
appendages on cells) lies at the heart of LMBBS. The challenges that lie ahead involve
understanding how dysfunctioning cilia contribute to various syndrome aspects. These
discoveries have brought closer the goal of designing treatments to prevent further visual
deterioration or weight gain.
Professor Beales has been medical advisor to the LMBBS Society since 1996 and was
made President of the Society in 2005. In 2010, he established, with the help of the Society,
National Multi-disciplinary Clinics, with a comprehensive genetic testing platform for all
persons with LMBBS in England and Scotland.
Stefan Crocker
Personal Perspective
I am 32 and was diagnosed with LMBBS ten years ago. Before
diagnosis, I always had to explain my symptoms as separate ailments,
however diagnosis allowed me to use a single label and I felt better
able to explain. I struggled to see in the evening and at night, so after
diagnosis, I contacted the local visual impairment team and had
mobility training; now the white cane is out most of the time once it gets
dark. Apart from that, diagnosis allowed me to investigate other ways
of coping with the syndrome such as magnifier computer software, and
a talking button phone, which has now been upgraded to a a shiny
touch screen talking IPhone (other smart phones are available!).
The main thing diagnosis has helped me with, is coping in general and being more confident
with the syndrome. Education wise, I am currently studying Politics at the University of
Portsmouth. I am in my final year which means facing the joys of writing my dissertation and
mingling with the locals, who are maybe not that understanding of my white cane 100% of
the time!
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Laura Dowswell
Parents Supporting Parents Workshop
I’m Laura, married for 22 years to the ever patient and laid back Nick and
we have two children – well they’re not really children anymore! Maria is
19 and Greg is 17. We live right by the sea at The Witterings on the
south coast and enjoy summer days out on the sea on our boat and in the
winter long beach walks with our much loved old dog.
We became involved with the society after Maria was diagnosed with BBS
at age 14 and we attended our first conference four years ago. We were
amazed by the amount of support and information we got and the lovely –
hopefully lifelong – friends we made. As a family, and of course BBS does affect the whole
family, we were determined to ‘give something back’ and I now provide support to families at
the London clinics as well as at the annual conference.
I look forward to meeting all our new families and conference first timers as well as seeing
lots of old friends.
Christie Emsley
Registered Dietitian at Guy's & St Thomas' NHS Foundation Trust.
Christie has been a member of the Guy’s team for over a year, since
moving to London from Australia, where she studied Nutrition and Dietetics
and Human Movement. She has experience in nutrition relating to obesity,
diabetes, renal disease, cardiovascular disease, malnutrition and food
intolerances. Christie enjoys travelling and is currently training for her first
marathon.
Sarah Flack
Principal Dietitian, Great Ormond Street Hospital for Children NHS Trust
Sarah has worked at Great Ormond Street Hospital for 16 years and has
covered a wide variety of clinical areas during this time. Prior to maternity
leave five years ago Sarah specialised in looking after children with
kidney problems and in this role saw children with BBS. Sarah now works
part time and is really enjoying her role in the multidisciplinary BBS
clinics. Sarah has two children (aged five and nine) which have offered
new insights into the challenges of providing a healthy, balanced diet in
practice!
Dr Elizabeth Forsythe
Clinical geneticist
Elizabeth is a clinical geneticist, working with Professor Beales as part
of the genetics team in the BBS clinics in London; she is also a
member of Professor Beales’ research team in his Cilia Disorders
laboratory. Elizabeth also a special interest in understanding
genotype-phenotype correlations (i.e. whether the type of genetic
change affects the medical problems a person with BBS encounters)
and developing therapeutics for Bardet-Biedl syndrome.
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Rebecca Goodman
Personal Perspective
My name is Becky Goodman, I am 33 years old. I was born with
LMBBS and I was diagnosed very early, when I was a baby. I went
to a primary school in Weston-super-Mare, and although it was a
school for children with learning difficulties, I only had visual
impairment.
When I was 16 I went to the West of England College in Exeter. At
the college I learned how to be independent, doing such things as
cooking, cleaning and shopping. I also completed courses towards
further education, including an NVQ in Administration. I also did
work experience placements.
I left the college when I was 22 and lived in a supported or transitional house with one other
student and a support worker. I was there for about 2 years and then found my own flat in
Exeter, where I have lived ever since. I have support workers for 14 hours a week, and care
workers who help with personal care.
I have done various voluntary jobs, but due to health issues I have been unable to join the
job market. However, I enjoy a good social life; I go to a Monday and Tuesday Club at
SENSE, I go wheelchair dancing with my boyfriend (who has ataxia) and I go to meetings of
TORCH Trust, a Christian fellowship group, every month. I also go to Slimming World every
week, and church on Sundays.
I love living independently, and being able to see my friends and go where I want to. I feel
that I have achieved a lot so far in my life, and I look forward to enjoying life to the full.
Annika Lindberg
Chartered Counselling Psychologist, Guy’s and St Thomas’s Hospit al
Annika is a Chartered Counselling Psychologist, registered with the
Health Professions Council (HPC) and with the British Psychological
Society (BPS). Since qualifying as a Psychologist in 2004, she has
been working and conducting research within the area of problem
gambling. Annika spent a few years in Las Vegas working with
Gambling addictions and then resumed her work at the National
Problem Gambling clinic in London where she conducts a group
program for homeless problem gamblers.
Annika has previously been working with Physical Health at Royal Free hospital and in
Community Mental Health. She currently works for Guys & St Thomas Hospital
Occupational Health Department where she is setting up and running a Cognitive
Behavioural Therapy (CBT) Service for staff from the hospital and also has an engagement
with Genetics at Guys Hospital, the Bardet-Biedl-Syndrome clinic. Annika combines her
NHS practice with private work at Capio Nightingale, primarily seeing individuals suffering
with behavioural addictions.
Annika is passionate about assessment and treatment. She has now been with the BBS
clinic for two years and is currently focusing on gathering data that can be used to
better understand the psychological needs of individuals who have BBS.
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Dr Helen May-Simera
National Eye Institute (Washington DC)
Helen was first introduced into the world of LMBBS when she did her PhD
with Prof. Beales at the Institute of Child Health, UCL, London. During
that time she was investigating the molecular and functional basis of the
syndrome. In 2008 she moved to Washington DC to continue her
research at the National Institute of Health. She moved to the National
Eye Institute (still in Washington DC) at the start of 2012 because she
wanted to focus on aspects of the disease that more directly affect BBS
patients.
Helen is hoping to return to Europe and continue her research on the underlying molecular
mechanisms of the syndrome and is currently waiting to hear from various grant funding
bodies. She attended her first patient conference in 2004 and has tried to come every year
since. She would like to thank all of her friends in the BBS family for their continued support
which allows her to stay motivated in the lab.
Marie McGee
Transition Co-ordinator, Birmingham Children’s Hospital
Marie is the Transition Care Co-ordinator for the Rare Diabetes Team at
Birmingham Children’s Hospital NHS Trust. She is one of a few
practitioners in the UK who has been specifically appointed to develop
transitional care for young people with long term health conditions. Marie
has a remit to support the adolescent rare diabetes programme and also
to facilitate the transfer of individual young people to adult services.
Working with families she supports the development of young people’s
knowledge and skills with their healthcare.
Marie also has an extensive background with over 23 years experience working in primary
schools across inner city localities in Birmingham. Marie developed and co-ordinated the
mentoring strand across 15 primary schools and her innovative approach was recognised
with a Teaching Award aimed at highlighting excellence and encouraging best practice.
Marie also runs a Mentoring Consultancy, providing training and advice to professionals and
families across a range of areas, including developing family skills and managing behaviour
problems.
Maria Peploe
Introducing Guide Dogs for Children and Young People
Maria is a trainee children and young person’s mobility instructor for the
Coventry mobility team and works with children and young people on
local authority contracts, teaching mobility and habilitation. Maria is
also engaged with the visual impairment sector, promoting the services
on offer, including the buddy dog service and Guide Dogs for children
and young people.
Maria will be available on Friday afternoon and evening with one of her
guide dogs, to answer any of your questions during that time.
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Ray Perry
Benefits Officer, Kent
Ray Perry is an Area Benefits Officer with Kent County Council Social
Services Department, based in Tonbridge, and has over 25 years’
experience, giving advice and training on Social Security Benefits.
Ray is a member of the National Association of Welfare Rights Officers
(NAWARA) and the London Welfare Rights Officer Group (LWROG). He
has a particular interest in LMBBS and has already successfully taken
many LMBBS and registered-blind cases to appeal.
Ray can provide LMBBS members with a benefits check to ensure that
their benefits are being maximised. He is also able to offer advice on procedures and tactics
if you are considering taking a case to appeal.
Caroleen Shipster
Paediatric Speech and Language Therapist, Great Ormond Street Hospital
Caroleen is a paediatric speech and language therapist at Great
Ormond Street Children’s Hospital. She has worked with children from
infancy to adulthood in a range of settings, which include pre-school
settings, child development centres, community clinics, hospitals and
different types of schools.
Caroleen has worked with children who have all types of speech and
language problems including those caused by hearing impairment,
structural difficulties, neurological problems, and learning difficulties.
She has a particular interest in craniofacial conditions and speech
disorders. Caroleen has worked in the UK and the USA and has
published many articles on speech and language difficulties. She has
worked in the Bardet-Biedl Clinic at GOSH since 2010.
Kathryn Sparks
BBS Clinical Nurse Specialist, Great Ormond Street Hospital
Kathryn has worked as a children’s nurse at Great Ormond Street
Hospital for over ten years and has gained experience in various fields
during that time. She joined the BBS team in September 2010 to help
cover the London clinics.
Kath has a keen interest in looking into ways in which bloods are taken
from children, especially as blood tests are a fundamental way of
monitoring a person’s condition. Her aim is to minimize any trauma felt
by the child and to alleviate pain during the procedure, so that the next
time blood tests are needed, the child doesn’t feel scared or as scared.
Another aspect of Kath’s role is to provide support for patients and families and to liaise with
other multi-disciplinary teams involved with the care of those affected, both within GOSH and
in the community.
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LMBBS Conference: Saturday Programme
Hilton Hotel, Northampton, 26th April 2014
8:30am
Registration and refreshments in lobby for day delegates
9:15am
Conference opens in Collingtree
9:25am
Welcome and Introduction to the Day
Professor Philip Beales
9:35am
LMBBS Annual General Meeting
10:00am
Update on Research and Study of LMBBS
Professor Philip Beales
10:40am
Benefits
Ray Perry
10:50am
Refreshments – Collingtree 2 and Business Corridor
11:10am
How Cilia Can Help us to See
Dr Helen May-Simera
11:35am
Coping Better With Bardet-Biedl Syndrome: An introduction to
coping skills for the affected individuals and their loved ones.
Annika Lindberg
12:00pm
Personal Perspective
Stefan Crocker
12:15pm
Short Introduction to Speech/Language Workshop
Caroleen Shipster
12.25pm
Results from the BBS Clinic Questionnaire and Future
Research
Dr Elizabeth Forsythe and Kath Sparks
12.55-2pm
Lunch in Seasons Restaurant and Lobby
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Workshops
2:05pm-2:35pm / 2:40pm-3:10pm / 3:15pm-3.45pm
Choose 3 workshops to attend from the list below; each workshop lasts
30 minutes.
Professor Phil Beales &
Dr Helen May-Simera
Informal Q & A
Collingtree 1
BBS Dietitian – BCH
Waseema Azam
1st Session: Watson
Genotype/Phenotype
Questionnaire
Dr Elizabeth Forsythe and
Kathryn Sparks
Collingtree 2
BBS Dietitian – GOSH
Sarah Flack
2ndSession: Watson
Clinical Psychologist
Annika Lindberg
Brudenell Room
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BBS Dietitian- GUYS
Christie Emsley
3rd Session: Watson
Supporting Young People
through Transition
Marie McGee
Lowther Room
Benefits Info and Support
Ray Perry
Meeting Room 1
Parents Supporting Parents:
Information and Chat
Laura Dowswell &
Claire Anstee
Reception
Royal National College for
the Blind
Tim Broome
Lobby
3.50pm
Return to Collingtree
3.45pm
Personal Perspective
Rebecca Goodman
4:45pm
Closing Remarks
Annual General Meeting
The Hilton Hotel, Northampton
26th April 2014
Agenda
Minutes of 2013 AGM
Election of Honorary Officers
Of the current Officers, (Phil Humphreys, Chairman; Steve Burge, Vice-Chairman; Kevin
Sales, Treasurer; Julie Sales, Secretary; Conference & National Co-ordinator, Chris
Humphreys and Newsletter Editor, Tonia Hymers) all officers are eligible and have agreed to
stand for re-election. Committee member, Emma Oates, has covered the role of Fundraising
Co-ordinator for the past year and is now eligible for election into this position.
Election of Committee
Of the current Committee members (Richard Zimbler and Allan Clark), both have a further
year to run in their present role. There are two spaces on the committee and nominations
are therefore invited.
Chairman’s Report
The Chairman will present the Laurence-Moon-Bardet-Biedl Society’s Annual Report.
Treasurer’s Report
The Treasurer will present an overview of the Society’s accounts.
Appointment of Auditor
Any Other Business
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Minutes of the LMBBS Annual General Meeting 2013
The Hilton Hotel, Northampton
20th April 2013
Minutes of 2012 AGM
The Minutes of the Annual General Meeting on Saturday 21 st April 2012, previously circulated, were agreed
and signed.
Election of Honorary Officers
Of the current Officers, Terry Crotty has resigned and Anne Crotty has declined to stand for re-election.
The Chairman thanked them for their valuable contribution. All other officers were eligible and were duly
elected unopposed. Nominations were invited for the vacant positions and two nominations were
received for the post of Vice-Chairman: Steve Burge and Allan Clark. A paper ballot was held and Steve
Burge was successfully elected to this role. One position remained vacant with no nominations.
Election of Committee
Of the current Committee members (Richard Zimbler, Emma Oates, Steve Burge and Allan Clark), Steve
Burge and Allan Clark were due to retire, however they both wished to stand for re-election. Following
Steve Burge’s election to the role of Vice-Chairman, one position remained vacant with no nominations.
Allan Clark was re-elected to the committee unopposed.
The LMBBS Committee for 2013-2014 is therefore: Phil Humphreys (Chairman), Steve Burge (ViceChairman), Chris Humphreys (National Co-ordinator), Kevin Sales (Treasurer), Julie Sales (Secretary), Tonia
Hymers (Newsletter Editor), Allan Clark (Trustee), Richard Zimbler (Trustee) and Emma Oates (Trustee).
Two vacancies remain.
Chairman’s Report
It deeply saddens me to have to tell you that one of our members, Fiaz Bokhari, tragically passed away on
28th January this year. Our sincere condolences go to the family on behalf of everyone at the LMBBS.
Another special family that is not here with us today, due to illness is the Begley’s. We send our good
wishes to all the family and look forward to seeing them next year. Margaret sends their good wishes to all
the delegates for a successful conference.
We wish a speedy recovery To Johnny Fagan from Northern Ireland, at home now after spending between
four and half months in hospital. Johnny’s three-year-old daughter, Caitlin and her mum Sharon are
recovering well from their living kidney transplant and we send our best wishes to all the family. Another
family missing today are Emma, Steve, Katie and Tom Oates. Emma, as you know, is on the committee,
however unfortunately two weeks ago Steve was taken ill and is not well enough to travel to come here
this weekend. We send warm wishes for a speedy recovery.
Our good wishes also go to Steven Sherwood and Vicky Merchant who have both undergone kidney
transplants this year. Our thoughts are also with Emma and Paul Turnbull and family, Julie and Kevin Sales
and family, and all those who are coping with illness at this time; we send them all our good wishes.
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Over the years our charity has grown, and with the introduction of clinics, membership has increased
dramatically. We are fortunate to have Michael and Drina Parker representing LMBBS on the Ciliopathy UK
Committee and a couple of very special families who work in the background, helping where they can,
however, looking ahead to the future, we need more individuals with drive, commitment and passion, who
one day, will carry the Society forward, as indeed our present management committee have done for so
many years. We need organisation skills, individuals with good networking skills who are happy to attend
events and conferences on our behalf to further our reach and extend our influence, individuals who keep
up to date with research and developments, and who are passionate about our charity.
New committee members are not expected to take on major roles, just to work alongside the team to gain
experience, with a view to being in a position to take a more active role at some point in the future. As of
this Annual General Meeting we are very disappointed to have two unfilled vacancies on the committee.
We would therefore like to invite members to get involved somehow over the next year, with a view to
going forward as nominees at next year’s AGM. We would also like to develop sub groups to support the
committee, for example a fundraising support team, newsletter support team and so on. If you think you
may be able to help in some way, however big or small, please talk to one of us and we’d be only too
happy to answer any questions that you may have.
I would like to begin by thanking Phil Beales for his dedication to the LMBBS, without whom we would not
be where we are today. All delegates have a copy of the Trustees Report, a copy of which is on our web
page. We are now going into our third year with BBS clinics and as a result, our membership is continuing
to grow. I would like to thank all of the committee for their unstinting work and Drina and Michael Parker
for their continued contribution to the Ciliopathy Alliance UK on our behalf. We were fortunate to have
interest from a few of our members last year which we gladly accepted. Claire Anstee has settled in to her
new role as the New Families’ Contact, which is proving to be very successful. Emma Oates, Laura
Dowswell, Jennifer Pare, Ross Jones, Steve Burge, and Kevin Sales have been working as volunteers in the
LMBBS clinics and we thank them also for their contribution.
A special thank you goes to all those who were so generous with donations and fundraising in the past
year. Whilst not wishing to single out any particular person or family, as you have all been exceedingly
generous, a special mention must go to one of our newly diagnosed families, Zoe and Gary. After their first
visit to the Great Ormond Street Hospital Specialist Clinic, they decided to set themselves a nine month
charity target to raise funds for the Society, which ended last Sunday with the successful completion of the
Brighton marathon; their aim is to raise £5,000 and they are well on the way. As I said, you have all been so
generous and our thanks go to each and every one of you.
Treasurer’s Report
For the financial year ending 1st January to 31st December 2012, the Society received an income of £48,801,
a decrease of nearly £10,000 on the previous year. Fundraising and donations, however, increased
compared to the previous year, for which we are extremely grateful. The overall drop in income is due to
unsuccessful grant applications and a decrease in marathon donations.
Expenses for the same period were considerably higher compared to 2011 at £57,000, an increase of
£18,000 on 2011. The main contributor towards this increase was the Family Conference, due to the
substantial rise in number of delegates and families attending. The society subsidises general attendance,
pays for all children and child care team, adults who have LMBBS, the Committee, Contributing
Professionals and of course the trip to Drayton Manor Theme Park. The cost of the weekend was just over
£38,000. The cost to the Society, after taking into account delegate contributions, of £13,150 was £25,500.
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For Conference 2013, all paying delegates have been asked to book and pay for their own accommodation,
and at the request of many who have the syndrome they have been included within this group and we
thank them for their contribution.
Since the start-up of the clinics, all printing costs have been funded by the NCG budget. However, with
patients on the database having more than doubled and our budget being fixed for five years the strain on
the clinic’s account is starting to show. The clinics lengthen the reach of our charity considerably and
enable us to help so many families and individuals, providing face to face support to four or five times as
many people. We strongly feel that the Society should assist financially, where appropriate, and in 2012
the charity account shared the cost of printing newsletters and conference reports with the LMBBS clinics’
account. It was reported in 2012 that £2500 was transferred from the Society account to the clinics’
account in response to a temporary deficit, and I’m pleased to report that the clinics’ account has so far
managed to repay £1250 back to the society account, with the remainder being repaid in 2013.
In summary, the charity’s main expense is always going to be our Annual Family Conference; however, in
2013 we should see this figure reduce with the new booking procedure in place. Anyone wishing to
fundraise to contribute towards the cost of the weekend can call any committee member for our support
and of course we encourage all members, their friends and family, to join the ‘Friends of LMBBS’ by either
fundraising or setting up a monthly standing order. As a committee we are truly grateful to all our
volunteers and fundraisers for the continued support of the charity, as without their concerted efforts we
would be unable to meet our goals and objectives.
Appointment of Auditor
The Committee proposed that the Society continue to appoint Michael Bannister of, Fryza Bannister
Financials Ltd, for the coming financial year and this was duly agreed.
Any Other Business
In the absence of any other business, the meeting was closed. The date of the next meeting was set for
Saturday 26th April
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LMBBS CONFERENCE MENU
FRIDAY
SATURDAY LUNCH
Seasons Restaurant from 6pm-8pm
Selection of Salads:
(Coleslaw, Potato Salad, Tossed Leaves,
Cucumber Salad, African Salad with boiled
Eggs, Red Cabbage and Sultana Salad)
Penne Pasta with Red Pesto
Salmon Platter with Seafood
Selection of Cold Meat Platters
Selection of Terrines with a Selection of
Chutneys
Pies with Pickles
Children’s Menu
Crudites & Nachos with fresh dips
Garlic Bread
Mild Chicken Curry with Poppadom
Fresh Cheese & Tomato Pizza
Fish fingers
Bangers & Mash
Served with choice of potatoes or rice
Salad or vegetables
(peas/sweetcorn/carrots)
Choice of Yoghurts/Ice Cream/Jelly
Fruit salad at buffet bar
Jugs of Orange Squash & Blackcurrant
Adult Menu
Creamy Parsnip Soup with Garlic Croutons
Exotic Prawn Cocktail
Chicken, Ham and Leek Casserole
Baked Salmon Wellington with Sauteed
Spinach
Braised Father Blade of Beef
Vegetable Thai Curry with Rice Crackers
Mashed Potato / New Potato
Cauliflower Cheese
Steamed Rice
Mixed Vegetables
Italian Tiramisu
Strawberry Slice
Toffee and Pecan Cheesecake
Selection of English Cheese with Crackers
Sliced Fresh Fruit
Coffee & Mints – served at table
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Alternative hot option of:
Mini Fish and Chips
Mini Cottage Pie
Baked Risotto with Green Beans
Dessert
Banoffee Pie/Manchester Tart/Fruits of
the Forest Tart/Mandarin Tart/Chocolate
Mousse
Fresh Fruits with a Selection of Fruit Coulis
and Fresh Cream
Tea/coffee/Iced Water
SATURDAY EVENING MEAL
6.00pm till 8.30pm
Children’s Menu
(Children may eat from adult menu:
orders taken at table)
Chicken Nuggets with Oven baked wedges
Jacket Potato and choice of toppings
(Tuna Mayo/Baked Beans/Cheese/Prawn
Mayo)
Spaghetti Bolognaise
Chicken Fillet Burger
Mixed Salad at Buffet Bar
Choice of Yoghurts/Ice Cream
Fruit salad at buffet bar
Saturday Eve Meal - Adult’s Menu
Grilled Mushroom and Tomato
Top Side of Beef with Yorkshire Pudding
Honey Roasted Gammon with Apple
Sauce
Vegetable Strudel with Sweet Chilli Sauce
Potato Gnocci with Wild Mushroom Sauce
Chocolate Fudge Cake
Selection of Cheesecake
Fruit of Forest Slice
Fresh Fruit Salad
Cheese & Biscuits with Chutney
Roasted Potatoes
Seasonal Vegetables
Coffee & Mints
Delegates 2014
Julie Armstrong
Lee James
Oliver & James
Doncaster
Jason & Claire Anstee
James, Emmy & Holly
Brixworth, Northampton
Craig Barrass
Newcastle Upon Tyne
Margaret Begley
Terry & Victoria
Swansea, West Wales
Nicholas & Joanne Birkby
Harvey & Jordan
Tunbridge Wells, Kent
Steve Burge
Shepherd’s Bush, London
Jackie Chapman
Wendy Copeland
Alison Johnson
Nottingham
Mike & Margaret Covell
Ben Covell
Pinner, Middlesex
Allan Clark
Dunbartonshire, Scotland
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Stefan Crocker
Brickhill, Bedfordshire
Graham Daff
Margaret Daff
Kettering, Northants
Paul Darville
Plymouth, Devon
Nick & Laura Dowswell
Greg & Maria
East Wittering, West Sussex
Claire & Lee Eccles
Josh & Ryan
Wednesbury, Birmingham
Daniel Evans
Anna Binns
Harborne, Birmingham
Darren Evans
Vicky Davies
Harborne, Birmingham
Joseph Evans
Winchester Hampshire
Jackie Farrington
Steve Moscrop
Jack
Middlewich, Cheshire
Abbie Geeson
Cath Geeson
Patricia Geeson
Jessica
Brighton, East Sussex
Susan & George Gent
Church Stretton, Shropshire
Rebecca Goodman
Chris Norton
Newtown, Exeter
Nigel & Karina Hills
Ben
Midsomer Norton
Dianne Hand
Pamela Callagan
Heaton Mersey,Stockport
Jenna Hook
Daniel Scott
London
Rob & Nicola Hueting
Skye & Ryan
Berkhampstead
Phil & Chris Humphreys
James Humphreys
Newport, Gwent
Marie & Marc Hughes
Emily Huges, London
Rob & Tonia Hymers
Daniel & Connor
Dovercourt, Essex
Shehnaaz Jinwalla
Leeds, West Yorkshire
Howard Jones
Alex Jones
Darlington
Abhimanyu Kochhar
Anuradha Kochhar
Kensington, London
Sally Lakin
Christopher Lewis
Daniel & Oliver
Combe Martin, North Devon
Graham Lilley
St Helens, Merseyside
Graham Longly
Haxby, Yorkshire
Karl McCarthy
Jacqui Jones
Chelsea & Keira
Chorlton, Manchester
Ian McDonald
Pauline Reynolds
Peasedown St John, Bath
Hazel McAllister
Stock Orchard.London
Morag & Adrian McKay
Jack
Drimoleague, Co Cork
Grant & Lindsay Mapley
Lydia & Lucas
Tilehurst, Reading
Vicky Merchant
Wayne Fitzgerald
Waterlooville, Hampshire
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Sandra Messhi
Earls Court, London
John O’Donaghue
London
James O’Neil
Mitcham, Surrey
Noreen Oakes
Sean Oakes
Chapelizod, Dublin
Emma & Steve Oates
Tom & Katie
Harrogate, North Yorkshire
Marie Owen
Shaun Owen
Suvannah
Penderford, Wolverhampton
Michael & Drina Parker
Richard Parker
Chalfont St Giles, Bucks
Jennifer Pare
Mathew Pare
Wolvey, Leicestershire
Tracey Pearce
Billy & Lauren Pearce
Shoeburyness, Essex
Gary & Janice Price
Fareham, Hampshire
Claire & Brian Pugh
Maisie. Christopher & Grace
Abbeymead, Gloucestshire
Alan Rawlings
Ourique, Portugal
Nigel & Joan Robson
Rosa Robson
Guernsey, Channel Isles
Stella Rourke
Helen Rourke
Cradley Heath, West Midlands
Tracey Russell
Clement
Tunbridge Wells, Kent
Kevin & Julie Sales
Danielle & Hollie
Chloe Maclean
Tunbridge Wells, Kent
Jackie Salt
Mitcham, Surrey
Helen Petty
Sian Petty
Steven Smart
Western Park, Leicester
Stephen Sherwood
Bobblestock, Hereford
Heather Shearer
Epsom, Surrey
Maurice & Sue Sloane
Tom ,Oliver & Josh
Larkfield, Maidstone
Jill Staples
Kelly Sheppard
Portishead, Bristol
Jill Stirland
Helen Stirland
Doncaster
Tom Rawlings
Trowbridge, Wiltshire
Jean Stone
Mark & Jason
Morriston, Swansea
Robert & Margaret Roache
Graeme Roache
Dunbartonshire, Scotland
John & Lindsay Swales
Evie
Ilkley, Yorkshire
Julian Thomas
Basingstoke, Hampshire
Sarah Borrows
QEH, Birmingham
Dr Helen May-Simera
Washington DC
Emma & Paul Turnbull
Nikita, John James
Summer & Oska
Morpeth, Northumbria
Anne Cheesebrough
SENSE, Birmingham
Caroleen Shipster
GOSH, London
Sonia Christou
UCL, London
Kath Sparks
GOSH, London
Joanna Vallance
Carole Vallance
Thorpeness
Rachel Wade
Ashleigh Dilnot
Selby, Yorkshire
Susan & Darren Ward
Wednesbury, Birmingham
Laura Wilson
Karen Smith
Caldicot, Gwent
Sally Yates
Jodie Davies
Iain Davies
Milton Keynes
Sean & Hannah Young
Ipswich, Suffolk
Richard Zimbler
Welshpool, Powys
Christie Emsley
Guys Hospital, London
Susan Feaviour
Chalfont St Giles
Sarah Flack
GOSH, London
Dr Elizabeth Forsythe
GOSH, London
Alyson Henty
Maidstone, Kent
Kjell Arne Hoeviskeland
LMBBS Norway
Annika Lindberg
GUYS, London
Dr Beth Hoskins
UCL, London
Professionals
Marie McGee
BCH, Birmingham
Waseema Azam
BCH, Birmingham
Ray Perry
Kent
Professor Philip Beales
UCL, London
Richard Oedegaard
LMBBS Norway
Tim Broome
RNC, Hereford
Evelyn Solberg
LMBBS Norway
Samantha Brueckner
Chalfont St Giles
Lill Susann Lerudsmoen
LMBBS Norway
Randi Naavik
LMBBS Norway
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Care Team
Andy & Caroline Beale
Fraser & Marcus Beale
Ann Beale
Alex Clark
Andy & Chrissie Coleman
Doug & Sandra Dale
Mark Gibson
Mark, Claire, Leah & Thomas
Gillman
Paul & Sharon Hartfield
Carl Larkin
Alex & Barbara Leake
Steve & Lorraine Maclean
Michael, Karen & Gemma
Masters
Matt Nash
Lucie Carter
Alan & Denise Nice
Graham, Jess & Leyton Nice
Daniel Parker
Suzie Johnson
Barbara Sales
Paul Sales
Jane Hollyer
Heidi Seddon
Wendy, Mark & Jordan
Waters
Denise Watts
Helen Watts
Jason & Amanda Wilbraham
Thank you for attending.
Please take the time to complete and return the evaluation form.
We hope you have enjoyed your weekend and look forward
to seeing you again next year.
The date for your diary is 17th/18th/19th April 2015.
We wish you a safe journey home.
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Evaluation Form
LMBBS Family Conference 25th- 27th April 2014
Constructive criticism is helpful to the conference organisers; tell us what works and what doesn’t
and we will do our best to improve year on year.
Please rate the following on a scale of 1 to 5, we would also really appreciate your comments.
1: Very unhappy / 2: unhappy / 3: Neither unhappy nor happy / 4: happy / 5: Very happy
1
2
3
4
5
The AGM:
……………………………………………………………………………………………………………………………………………………………
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1
2
3
4
5
The Saturday morning programme:
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1
2
3
4
5
The Saturday afternoon programme:
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1
2
3
4
5
Workshops:
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1
2
3
4
5
Childcare – Drayton Manor:
……………………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………………………………………………
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1
2
3
4
5
Childcare – Creche:
……………………………………………………………………………………………………………………………………………………………
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1
2
3
4
5
Children’s activities:
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1
2
3
4
5
Evening entertainment:
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1
2
3
4
5
Meals/Accommodation:
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……………………………………………………………………………………………………………………………………………………………
Which part of the day did you find the most interesting?
……………………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………………………………………………
Your suggestions for future conferences, topics, speakers, children’s activities etc:
……………………………………………………………………………………………………………………………………………………………
……………………………………………………………………………………………………………………………………………………………
Don’t forget you can exchange your completed form for a strip of raffle ticket
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