Delegates and Families at LMBBS Conference 2015

Welcome
to the
LMBBS Family Conference 2015
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
17
AGM Agenda
19
Minutes of Last AGM
20
Weekend Menus
22
Delegates List
23
Evaluation Form
27
2
LMBBS Family Conference 2015
Welcome to the LMBBS Family Conference 2015, my last as
Conference Co-ordinator and Phil’s last as Chairman; after 21
years of involvement with the Society, we are both retiring. For
those of you who are attending for the first time, I hope that you
enjoy the weekend as much as we, and others have over the years.
This fabulous weekend provides an excellent opportunity to relax
and make new friends in a friendly environment, share
experiences, join in activities and learn more about the syndrome
and latest research. Past delegates have greatly enjoyed the
comfortable surroundings of the Hilton Hotel and have been impressed by the care and
attention to detail provided by the excellent staff. Inside this pack, you will find all the
information you need about this very special weekend, however, if you have any questions
please do not hesitate to ask, whether it be a Committee Member, fellow delegate or one of
the Hilton staff, we are all here to help.
Our thanks go to Genetic Disorders UK who awarded LMBBS a grant to provide
a Children’s Development Officer. We now have Jackie Kearns and Angela
Scudder on board who will be available throughout the weekend to provide
support and information.
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) among many others and they will be very
pleased to chat with you.
At the end of the conference, you will be provided with 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 I hope that you too will be able
to say in 21 years what a difference the weekend has made to your lives, as it has to me and
my family.
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
Evening meal (rolling service) will be served in Season’s
Restaurant.
6.00pm onwards
Fun with Fruit: Make fruit kebabs and have fun with the BBS
dietitians.
7pm-9pm
Activities and Games in the Isham Room
7pm-8pm
Ceramic Mosaic Crafts (for older teens/young adults and adults) in
the Business Corridor
7.00pm
Families meet Creche Care Team in the Spencer Room
7.30pm
Families meet Drayton Manor Care Team in the Collingtree 2
and Bowling Trip Care Team in the Watson Room
8.00pm
A meeting for young members to develop a ‘Young Persons
BBS Group’ – Have your say, make friends and make a
difference! 8-17 yrs only in the Isham Room
(Our thanks to Genetic Disorders UK and Jeans for Genes)
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
Ray Perry, Benefits advisor will be available all evening for one to one support and
information. Please contact Chris Humphreys or a committee member to arrange an
appointment. Alternatively speak with a committee member when you arrive at the
conference.
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.
4
Saturday
7.00am-9.00am
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
9.15am-5.00pm
Saturday Conference Programme in Collingtree
(see separate schedule)
11.45am
Carers and those going on Ten Pin Bowling trip to meet in the
FOYER
4.30pm
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
Business Corridor
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 Spencer 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 Spencer 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
At 7.30pm, there is a meeting in Collingtree 2 on Friday evening for all those going to Drayton
Manor and a meeting in Watson Room for those going Bowling.
Drayton Manor Park
8.55 – 9.00am – Make your way to Reception to meet your carer ready for a prompt
9.15 am 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 at Drayton Manor Park! 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 safety-conscious, 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 5.00pm. We ask that parents be waiting
in Reception ready to meet their child/young person.
Ten Pin Bowling
Bowling guests may attend the morning conference programme prior to going bowling, however
please be in reception by 11.45am at the latest.
11.45 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 2.30pm.
We expect the coach to arrive back at the Hilton Hotel at approximately 4.30pm.
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FRIENDS
FRIENDS
of the LMBBS
Name: _____________________
Address:____________________
________________________
of the LMBBS
Standing Order Form
I would like to become a ‘Friend’ of the LMBBS and make
the following regular payment:
Please pay the sum of £……………………………….…
________________________
Amount in words:………………………………………….
________________________
To:
Post Code: ___________________
Tel No:_____________________
I would like to become a Friend of the LMBBS:
Tick
Laurence-Moon-Bardet-Biedl Society ‘Friends Acc’
Account No: 70901059 Sort Code: 20-88-13
With effect from: …………………………….(Date)
And monthly thereafter.
Please complete the following in block capitals:
I have completed the
Name: ………………………………………………..…………
Standing Order form opposite
Address:……………………………………………………….…
Please send me a collection box
……………………………………………………………………..
…………………………………………………………………….
I wish to organise a fundraising event
Postcode…………………...……………………………………
and would like a Fundraising pack
Name of Bank:……………………..…………………………….
Address of Bank:………………………..………………………
Gift Aid Declaration
The Government allows charities to reclaim tax through
the Gift Aid scheme at no extra cost to you. At the
standard rate of income tax, your gift is worth 20% more
to us if you allow LMBBS to claim Gift Aid. Please tick
the box below and help us to do more with your
donation.
I would like the LMBBS to reclaim the tax on any
donation I make. I have paid an amount of UK
income tax or capital gains tax equal to any tax claimed.
…………………..……………………..…………………………
Postcode:………………………..………………….…………..
Account No:………………………………………………………
Sort Code:………………………………………………………..
Reference:…………………………………………………
Signed……………………………………………………………
Date:………………………………………………………
Thank You
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Please complete and return to:
Any Committee Member
Conference Profiles 2015
Claire Anstee
Parent Support
I’m Claire, married to Jason for 16 years and we have three children,
James is 17, Emmy is 12 and Holly is 9. We live in a village in
Northamptonshire; I enjoy writing, reading and spending time with our
family and friends and holidays on the coast.
Just as Emmy was being diagnosed we contacted the Society, the support we gained was
amazing and made a huge difference to us. Even though Emmy wasn’t formerly diagnosed
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’ve been every year since and decided that we needed to give support to the
Society just as they had for us. I provide support as the New Families support contact via
email/phone as well as at conference in the New Families meeting. I am looking forward to
seeing old friends and welcoming new ones at conference.
Laura and I hope to offer a friendly ear of support as well have information that may be
useful such as sports clubs, social activities and organisations that can offer practical
support too. We hope to share positive experiences in what can be a worrying and daunting
time.
Waseema Azam BSc (Hons)
Team Leader for Paediatric Diabetes & BBS Dietician at BCH
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 Beidl Syndrome.
Waseema is now full time Team Leader for Paediatric Diabetes and BBS Clinics Dietician,
supporting and working with the families who attend Birmingham Children’s Hospital.
Waseema is on hand all weekend to help with dietary issues and will be running a workshop
on Saturday afternoon.
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Professor James Bainbridge MA PhD FRCO phtth
Professor of Retinal Studies UCL, NIHR Research Professor
NIRR Biomedical Research Centre for Ophthalmology.
Consultant Ophthalmologist, Moorfields Eye Hospital, NHS Trust
Foundation Trust
Prof Bainbridge's aim is to develop effective new treatments for retinal vascular and
neurodegenerative diseases. His programme of research extends from the laboratory
investigation of mechanisms of disease in experimental models, through preclinical
development of novel therapies, to clinical trials of new medical and surgical interventions.
He performed the World’s first gene therapy for inherited blindness and Europe's first stem
cell transplantation for macular degeneration. In 2012 he was appointed Chair of Retinal
Studies at UCL and in 2012 was appointed NIHR Research Professor.
Professor Philip Beales.
Institute of Child Health, Great Ormond Street Hospital
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.
In 1999, Professor Beales 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.
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.
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Laura Dowswell
Parent Support
I’m Laura, married for 24 years to the ever patient and laid back Nick and we
have two children – well they’re not really children anymore! Maria is 21 and
Greg is 18.
We live right by the sea at The Witterings on the south coast and enjoy the beach life in
both summer and winter.
We became involved with the Society after Maria was diagnosed with BBS at age 14 and we
attended our first conference 5 years ago. We were amazed at 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.
Liz Ellis
Researcher, University of Birmingham
Liz Ellis is a researcher at the University of Birmingham in the department of Disability,
Inclusion and Special Needs. She is interested in the lives and experiences of people who are
deafblind or have a sensory impairment. Liz’s research project is about the experiences of
people (both children and adults) with rare syndromes (including BBS) at specialist clinics.
Liz and the team are interested in finding out what works well for people with BBS and their
families when they go to these clinics, or why they do not go to clinics, and what doesn’t
work so well. This project is funded by Sense the charity for deafblind people.
Christie Emsley
Registered Dietitian at Guy's & St Thomas' NHS Foundation Trust
Christie has been part of the GSTT team for two years since moving to
London from Australia, where she studied Nutrition & Dietetics and Human
Movement. She has experience in nutrition relating to obesity, diabetes,
renal disease, cardiovascular disease, malnutrition and food intolerances. Christie enjoys
exploring the sights and foods of Europe!
Daniel Evans
Personal Perspective
Hi my name is Daniel Evans but I don’t mind being called Dan or Dan the
man or Dare Devil Dan. I have LMBBS and registered blind but still have
little bit of useful vision. When I left college I got a 3 month job with a
Children’s Charity based at the college and volunteering for the College. At the end of the 3
months I carried on helping out at the College.
I was later offered a part time job with the Children’s Charity. At this time I was also offered
12
the lunchtime position on reception at the college. Unfortunately 4 years ago I was made
redundant from the Children’s Charity but still work on reception in the college.
In my spare time I do a lot of things to keep me happy. I go to the gym 5 times a week where I
have a personal trainer. I do this to help me control my weight and keep me fit to run. I have
completed 3 full marathons, London once and Brighton twice and I have run 13 half
marathons: Birmingham, Newcastle, Silverstone, Reading and the Isle of Man.
I run a Visually Impaired Ten Pin Bowling Club in Birmingham and we competed in the
British blind sport winter and summer leagues. I have been to the football, F1 rugby, Cricket,
Darts and the Paralympic Games in London. I have recently started athletics training and am
learning to swim at Anna’s Disability Swimming Club.
If you want to add me on face book or twitter that would be great. Look for Daniel Evans on
face book and on twitter look for tenpinkingpin.
Sarah Flack
Principal Dietitian, Great Ormond Street Hospital for Children NHS Trust
Sarah has worked at Great Ormond Street Hospital for 16 years and 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!
Elizabeth Forsythe
Clinical geneticist
Elizabeth Forsythe (BBS clinical genetics doctor) and Kath Sparks (BBS nurse)
will be talking about memory and learning in BBS. Many times in the BBS
clinic parents and people with BBS tell us that they have difficulties
maintaining concentration and that learning new things can be tricky. For many people with
BBS long term memory is excellent but short term memory is more of a challenge.
In this work shop we will bring a computer game that assesses many different aspects of our
ability to learn and remember. It can be used both by people with good vision and by those
with poor or no vision. We hope that the results of the computer game will give us an idea
of which aspects of learning are important in being able to live and work independently.
Tonia Hymers
Personal Perspective
I am married to Rob and we have two gorgeous sons, Daniel, 18 years and Connor, 15 years.
Daniel was diagnosed with BBS at around a year old and we attended our first Conference in
1998, when Daniel was 22 months old. A couple of years later, Connor attended his first
conference at 3 months old – he hasn’t missed one since! The difference it made to us as a
family was amazing. Meeting young people and adults with the syndrome and hearing
about their achievements enabled us to picture a much brighter future – we really were so
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very grateful. It is no surprise then that we were happily coerced onto the Committee soon
after; I took on the role of Fundraising Co-ordinator and then Newsletter Editor.
In a previous life, I worked for Barclays Bank for around seventeen years. In 2005, Daniel
became increasingly unwell with chronic renal failure and I gave up work to concentrate on
looking after my family. We were fortunate in that Dan and I were compatible and he was
able to have one of my kidneys; he had a successful kidney transplant in 2006, and
continues to do well. During this period, I enrolled with the Open University and in 2010,
graduated with a First in Social Sciences.
In April 2010, I became the Clinic Co-ordinator and Family Support Worker for BBS Clinics at
Great Ormond Street Hospital, London, and Birmingham Children's hospital.
Jacquie Kearns
BBS Child Development Officer
I’m Jacquie and I am very excited to be part of the BBS support team as the
new Children’s Development Office. I have already attended a few clinics
and met with some families and I am very much looking forward to the conference and
meeting with lots more.
I have previous experiences of working for a small charity, supporting families whose
children have a rare syndrome in a very similar role. I hope to use the experience and
knowledge I gained there to enable me to make a difference to children and adults with BBS
and the families.
A little about me, I am married to John and have two grown up children, Matthew and
Rebecca, both of whom have flown the nest but I probably see more of now than I did when
they lived at home.
I have a brother who has both physical and learning needs and he is my reason for going
into this field of work. I remember how my parents struggled to get support for him and
them as well as an appropriate education setting with adequate resources.
I decided to study special education, specialising in multi-sensory impairment at university
and worked for many years in a school for children with specialist needs, which was a
fantastic time in my career and taught me how individual people are.
I look forward to meeting many individuals in this exciting new opportunity I have been
given.
Annika Lindberg
Chartered Counselling Psychologist, Guy’s and St Thomas’s Hospital
Annika is a Chartered Counselling Psychologist registered with Health
Professions council (HPC) and with the British Psychological Society (BPS).
Since qualifying as a psychologist, Annika has been working and conducting
research within the area of pathological gambling, she has also been working with physical
health and mental health including CFS/ME at the Royal Free Fatigue Service. She is
currently working at Guys & St Thomas Hospital Occupational Health Department where she
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is setting up and running a CBT Service for staff from the hospital, she also has an
engagement with Genetics Guys Hospital where she works with individuals affected by BBS
and additionally is also still involved with at the National Professional Gamblers in the longterm clinics where she runs a club for homeless gamblers. Other experiences include
working privately with food addictions, obesity, cancer and families affected by autism.
Abigail Mance
Speech & Language Therapist
Abigail Mance has worked as a Speech and Language Therapist for eleven years in a range of
settings including mainstream and special needs schools and a specialist clinic for children
who stammer. She currently works in the Wolfson Neurodisability Service at Great Ormond
Street Hospital for Children NHS Foundation Trust and has an interest in the assessment and
management of children with autism spectrum disorders.
Ray Perry
Benefits Officer, Kent
Ray Perry is a Benefits Officer with Kent County Council Social Services
Department, based in Maidstone and has over 35 years’ experience, giving
advice and training on Social Security Benefits.
He 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 and discuss with them the implications of the Government’s
Welfare Reform Act. He is also able to offer guidance and advice on procedures and tactics if
members are considering taking a case to appeal.
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 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 24 years experience working in primary schools across inner city localities in
Birmingham UK. She developed and co-ordinated the mentoring strand across 15 primary
schools and her innovative approach was recognised and she was presented with a Teaching
Award which highlights excellence and encourages best practice. She also runs a Mentoring
Consultancy, providing training and advice to professionals and families across a range of
areas.
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Angela Scudder
Child Development Assistant
Hi, my name is Angela (Scudder). I'm the new Child Development
Assistant and I look forward to meeting you over the next few days.
Please come and find me, I will have my lovely blue "BBS polo shirt" on!
I would love to know how you would like me to support your families.
We have some very exciting things in the pipeline for 2015!
Just so you know a little about me : I'm mummy to Zac (9) and Zara (6). We live in
Beckenham, Kent, just south of London. Zac has a diagnosis of BBS so you’re in good
company! He started special school two years ago which was a big step, as some of you will
know. I'm pleased to say it was the best thing we have done. He's come on so much in all
areas and his health has greatly improved. But as always with BBS we take it a day at a time.
Here's to a great weekend!
Kathryn Sparks
BBS Clinical Nurse Specialist, Great Ormond Street Hospital
Kath 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. She has a keen interest particularly in looking at the way in which
children undergo blood tests. Blood tests are a fundamental way of monitoring an
individual’s condition. Her aim is to minimize the pain and trauma that may be experienced
during these procedures. Helping to provide a positive experience will change the way
patients view future tests. This role also provides support for patients and families, liaising
with the multi-disciplinary teams involved with the care of those affected both within GOSH
and in the community.
Sunny Bains
Action for the Blind
I have recently started my post working for Action for the Blind as an Assistive Technology
Coordinator. A key part of my role is to provide people with advice and guidance
surrounding access technology and smart phones/tablets to enable them to overcome
barriers and get online.
The advances in technology today, means that people experiencing sight loss can use apps
to reduce isolation, overcome barriers and increase independence by using things such as
the internet. My role is to advise people and deliver training.
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Saturday Conference Programme
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
Professor of Medical and Molecular Genetics
Wellcome Trust Senior Research Fellow in Clinical Science
Honorary Consultant in Clinical Genetics
President of the LMBB Society
9:35am
LMBBS Annual General Meeting
10.00am
Update on Research and Study of LMBBS
Professor Philip Beales
10:40am
Personal Perspective: ‘Dan the Man’
Dan Evans
10:55am
Refreshments: Collingtree 2 & Business Corridor
11:15am
“Promoting vision by retinal repair and regeneration”
Professor James Bainbridge
11:45am
An overview of communication difficulties in children with
autism.
Abigail Mance, Neuro disabilities Team, GOSH
12:15pm
Benefits
Ray Perry, DHSS Benefits Officer
12:30pm
Personal Perspective: ‘Running up that Hill’
Tonia Hymers
12:45pm
Closing Remarks
1:00pm
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Lunch in seasons Restaurant and Lobby
Workshops
2.15pm:3pm / 3.05pm:3:50pm / 3:55pm:4.40pm
(Maximum of 30 in each session, first come basis)
.
Collingtree 1
Collingtree 2
Professor Philip Beales & Team
Informal Q & A
Professor James Bainbridge
Informal Q & A
Lowther Room
Watson Room
Annika Lindberg, Clinical Psychologist
Informal Q&A
Autism and its impact on behaviour.
Abigail Mance
Reception:
Brudenell Room
Parents Supporting Parents:
Information and Chat
Laura Dowswell & Claire Anstee
Learning and Memory Study
Elizabeth Forsythe
J4G Funded Family Support Team
Family Days and Events
Jacquie Kearnes and Angela Scudder
Transition Information and Resources
Marie McGee and Lorraine Shaw
Birmingham Children’s Hospital
Meeting Room 1
Benefits Information and Support
Ray Perry
Royal National College, Hereford
Tim Broome
West of England Specialist College
Kate Gaulton
Research Project: Experiences of people
with rare syndromes
Liz Ellis
Meeting Rooms 2 & 3
Dietary Nutrition
2.15pm-3.00pm
Christie Emsley Adults (Room 2)
National Blind Children’s Society
Wendy Sainsbury and Hazel Wright
Waseema Azam BCH Families (Room 3)
Birmingham Action for the Blind
Sundeep Baines
3.30pm-4.30pm
Sarah Flack GOSH Families (Room 2)
4.45pm: Refreshments in Reception
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Annual General Meeting
The Hilton Hotel, Northampton
18th April 2015
Agenda
Minutes of 2014 AGM
Election of Honorary Officers
It is with sadness that we announce the retirement of our Chairman, Phil Humphreys and our
Conference/National Co-ordinator, Chris Humphreys, after many years of dedicated service. Julie Sales,
Kevin Sales and Tonia Hymers are also retiring as Trustees, however they will continue to perform their day
to day duties for the foreseeable future. Nominations are invited for these positions. The remaining
Officers, (Steve Burge, Vice-Chairman and Emma Oates, Fundraising Co-ordinator) are eligible for reelection.
Election of Committee
Of the current Trustees, (Richard Zimbler, Allan Clark and Claire Eccles), Richard Zimbler and Allan Clark are
due to retire, however are eligible to stand for re-election, Claire Eccles has a further year to run in her
present role and there is one space unfilled.
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
The present Committee propose to change the name of the charity from the Laurence-Moon-Bardet-Biedl
Society to Bardet-Biedl Syndrome UK. Agreement will also be requested for the subsequent changes to be
made to the wording of the constitution.
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Minutes of the LMBBS Annual General Meeting 2014
The Hilton Hotel, Northampton
26th April 2014
Minutes of 2013 AGM
The Minutes of the Annual General Meeting on Saturday 20 th April 2013, previously circulated, were agreed and
signed.
Apologies for Absence
Apologies for Absence were received from: Terry Begley (Senior), Michelle Begley, Jenna Hook, Daniel Scott, Jill
Stirland, Danny O’Sullivan and Bernie O’Sullivan.
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
were eligible for re-election and were duly elected unopposed. Committee member, Emma Oates, was elected into
the role of Fundraising Co-ordinator.
Election of Committee
Of the current Committee members (Richard Zimbler and Allan Clark), both had a further year to run in their present
role. There were two spaces on the Committee and nominations were invited. Claire Eccles was nominated and
duly elected.
Chairman’s Report
It is clear from the Trustees reports that it has, once again, been a busy year. The Society continues to grow, yet
despite this growth, as a community, our membership has never felt closer. Numbers continue to rise, mainly due to
the success of our BBS Clinics and with this increase in membership has come an increase in the number of generous
individuals committed to helping their charity move forward with purpose. My thanks go to all those who have
given up valuable time over the past year to support the work we do. Without this support, we would be unable to
meet our goals and objectives. I would like to thank all of the committee for their sterling work and commitment.
I would also like to thank Phil Beales for his continued dedication to LMBBS, without whom we would not be where
we are today. We are now into our 4th year with BBS Clinics and as a result we are able to reach out and support so
many more families and individuals. Credit must also go to our BBS Clinic Co-ordinators, who have worked so ably
over the past year ensuring our patients and their families are well supported to attend this vital service. The aim of
the BBS Specialist Clinics is to ensure patients receive expert attention and management and should bring about a
major change in how BBS is managed, with a focus on diagnosis, early intervention and good health management.
New patients are still coming through, with some parents self-referring, so raising awareness is still a crucial area for
us to focus on.
One way of achieving this is by attending Disability Events, such as Sight Village, for which we now have a team of
volunteers. We also attend relevant conferences and maintain good contact with similar organisations. In June
2013, LMBBS assisted in the organisation of the first Ciliopathy UK Family Weekend Conference for families and
professionals from various small rare group organisations. This was a tremendous success allowing networking
between all parties. It is hoped to make this a Bi-Annual event. We thank Drina and Michael Parker for continuing to
represent us on the Board of the Ciliopathy Alliance.
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Conference 2013 was again a great success, surpassing previous years and thanks must go to Chris Humphreys, Tonia
Hymers and Julie Sales for their commitment to this event. We now have good links with the Norway branch of
LMBBS, who are keen to learn from our specialist clinics. Our Vice-Chairman, Steve Burge spoke at the Norway BBS
Conference in March and was made most welcome. The Conference continues to be the focal point in the LMBBS
calendar and is looked forward to by many of our members and professionals who enjoy the chance to learn more
about the syndrome, both from the speakers and the delegates.
I have kept the best until last. I would like to give huge congratulations to Tonia and Julie who earlier this year were
successful in their bid for a grant from Genetic Disorders UK, as part of their Jeans for Genes campaign 2014. The
grant will enable us to employ a part-time Child Development Officer to support our families further. Our most
heartfelt thanks go to the families who were willing to go forward as Media Volunteers; the success of the
application is thanks to their generosity.
Treasurer’s Report
For the financial year, 1st January 2013 to 31st December 2013, the Society received an income of £41,740. Although
this appears to show a decrease in income of around £7000 compared to 2012, it actually reflects the change in the
Conference booking procedure. Previously, we would book hotel accommodation and guests would pay the Society,
however now, guests make their own bookings, so we have less income via delegate’s contributions, however we
also have a smaller conference bill.
In April 2013, we received a grant from Children in Need in the sum of £3500 to pay for the children’s activities at
Conference 2013. Our grateful thanks go to all those involved, the children and young adults had a great time.
Fundraising and donations have decreased over the year, but only by just under £1000, which, bearing in mind the
current economic climate indicates a great effort by all those involved.
The Society’s expenses for the same period have reduced considerably to £42,800, a decrease of £14,000 compared
with 2012. As indicated previously, the main contributor towards this decrease is the new conference booking
procedure. A further decrease in cost is due to adult delegates, who have BBS, now paying for their hotel room; all
other conference costs are met by the Society. This has reduced the cost of the Conference considerably, bringing
the total cost to the Society down to £17,000.
In financially challenging times, every charity relies on its regular donors and regular income to enable its core work
to continue. We have always rejected suggestions of membership fees however we do have a ‘Friends of the
LMBBS’ scheme, with many of our members making regular donations or holding fundraising events. Around £3,000
is paid into the charity’s account every year, via Standing Order, by our ‘Friends’ and we are so grateful for their
support.
In summary, the Society’s main expense is always going to be the Annual Family Conference; however we have seen
this figure reduce quite considerably this past year. Our second largest expense is the production and distribution of
our publications. We produce two Newsletters and a Conference Report annually and all editions are available in
hard copy, audio CD, via email and via our web page. Reproduction of leaflets is also a considerable expense.
As a committee, we are truly grateful to all our volunteers and fundraisers for their 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
18th April 2015.
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LMBBS CONFERENCE MENU
FRIDAY
Seasons Restaurant 6.00pm & 7.15pm
Children’s Menu
Pizza
Battered fillet of fish
Chicken curry and rice with poppadom
Baked potato with selection of toppings
Penne pasta in tomato sauce with optional parmesan cheese and garlic bread
Potato wedges
Salad Bar
Fruit kebabs
Ice Cream
Choice of Yoghurts
Jugs of Orange Squash & Blackcurrant
Children may eat from adult’s menu if preferred:
Adult Menu
Grilled Chicken with leek, bacon and stilton sauce
Oven roasted salmon with stir fry vegetables
Beef casserole with potato dumplings
Vegetable lasagne
Penne pasta in tomato and basil sauce with parmesan and garlic bread
Served with fresh market vegetables and potatoes
A choice of a selection of sweets
Fresh fruit
Cheese & Biscuits
Tea, Coffee & Mints – served at table
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SATURDAY LUNCH
Selection of Salads:
Coleslaw, Potato, Tomato, Tossed Leaves, Cucumber
African salad with boiled eggs
Red cabbage and sultana’s salad
Potato bravas salad
Penne pasta with red pesto
Dressed salmon with cucumber
Tiger prawns with Marie rose sauce
Fish platter and sea food
Selection of cold meat platters
Pies with pickles
Vegetarian Quiche
Greek Salad with feta cheese
Vegetarian samosas
Bruschetta
White and brown bread roll
Selection of desserts
Tea/coffee/Iced Water (served at table)
SATURDAY EVENING MEAL
Seasons Restaurant 6.00pm & 7.30pm
Children’s Menu
Adult’s Menu
Roast beef with yorkshire pudding
Roast beef with yorkshire pudding
Honey roasted gammon with apple sauce
Roast chicken in a tomato and basil sauce
Cod loin in a green pea puree
Vegetarian cottage pie
Vegetarian Thai curry with rice and poppadum
Spaghetti Bolognese
Chicken fillet burger with potato wedges
Bangers and mash
Choice of yoghurts/ice cream
Fruit salad at buffet bar
Served with roast potatoes and fresh
market vegetables
A Selection of Sweets
Cheese & Biscuits
(Ice Cream available on request)
Tea, Coffee & Mints (served at table)
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Delegates and Families at LMBBS Conference 2015
Aneeba Ahmed
Huma Ahmed
Haroon Aftab
Birmingham
Jason & Claire Anstee
Emmy & Holly
Brixworth, Northampton
Northants
Craig Barrass
Newcastle Upon Tyne
Margaret Begley
Terry Begley
Victoria
Swansea, West Wales
Nicholas & Joanne Birkby
Jordan Birkby
Harvey
Tunbridge Wells, Kent
Sonia Bouzidi
Nathan Bouzidi
Lutterworth, Leics
Stefan Crocker
Brickhill, Bedfordshire
Jenna Hook
Daniel Scott
London
Doug & Sandra Dale
Dovercourt, Essex
Rob & Nicola Hueting
Skye, Ryan & Joshua
Berkhampstead,
Hertfordshire
Nick & Laura Dowswell
East Wittering, West Sussex
Maria Dowswell
Harry Roberts
Countess Wear, Exeter
Claire & Lee Eccles
Josh & Ryan
Birmingham, West Midlands
Daniel Evans
Anna Binns
Harborne, Birmingham
Joseph Evans
Kate Goldsmith
Winchester Hampshire
Phil & Chris Humphreys
James, Donna, Megan,
Maya, Sue, Ross, Leah
Lisa, Dave & Rhys
Newport, Gwent, S. Wales
Rob & Tonia Hymers
Connor
Daniel Hymers
Dovercourt, Essex
Shehnaaz Jinwalla
Leeds, West Yorkshire
Sarah Leadbetter
Narbarough, Leicester
Michelle Bradley
West Yorkshire
Jackie Farrington
Steve Moscrop
Middlewich, Cheshire
Chris Bolton-Edenborough
Patten Bar, Herefordshire
Johanne & Paul Foster
Blackpool
Karl McCarthy
Jacqui Jones
Chelsea & Keira
Chorlton, Manchester
Steve Burge
Shepherd’s Bush, London
Abbie Geeson
Cath Geeson
Patricia Geeson
Jessica
Brighton, East Sussex
Ian McDonald
Pauline Reynolds. PA
Bath, Avon
Tim Burge
Amy Harrod
Virginia Cashin
Lydia Cashin
Woodley, Berkshire
Tracy Gibson
Pat Doble
Yate, Bristol
Allan Clark
Dunbartonshire, Scotland
Rebecca Goodman
Chris Norton
Newtown, Exeter
Mike & Margaret Covell
Ben Covell
Pinner, Middlesex
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Dianne Hand
Pauline Callaghan
Greater Manchester
Graham Longly
Haxby, Yorkshire
Hazel McAllister
Stock Orchard, London
Lindsay & Mark McKnight
Jack & Chloe
Ballyclare. Co Antrim
Louise Martin
Roger Simmons
Alex Jones
Peter Ellis PA
Darlington, Yorkshire
Vicky Merchant
Wayne Fitzgerald
Jane Sellers
Horley, Surrey
Chetan & Aruna Meshram
Yukta, Ishika & Tanya
Northampton
Kim Silver
Willow Silver
Eridge, East Sussex
John O’Donaghue
London
Maurice & Sue Sloane
Tom Sloane
Oliver Sloane
Josh Sloane
Aylesford, Kent
James O’Neill
Jackie Coughlan
Mitcham, Surrey
Sarah & Nigel Oakes
Joel & Toby
Maidstone, Kent
Marie Owen
Shaun Owen
Suvannah
Penderford,
Wolverhampton
Tracie Pearce
Billy & Lauren Pearce
Shoeburyness, Essex
Helen Petty
Sian Petty
Western Park, Leicester,
Gary & Janice Price
Fareham, Hampshire
Sam Proctor
Kenneth Holdway
Stoke-on-Trent, Staffs
Alan Rawlings
Ourique, Portugal
Tom Rawlings
Trowbridge, Wiltshire
Robert & Margaret Roache
Graeme Roache
Dunbartonshire, Scotland
Kevin & Julie Sales
Danielle Sales
Hollie Sales
Tunbridge Wells, Kent
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Jill Staples
Portishead, Bristol, Avon
Jill Stirland
Helen Stirland
Doncaster, Yorkshire
Jean Stone
Mark Stone
Jason Stone
Morriston, West Wales
Noeleen Wright
Michael Wright
Crosby, Liverpool
Sally Yates
Jodie Yates
Simone Hyams
Dawn & Christopher
Errington
Alfie & Poppie
Heelands, Milton Keynes
Hannah & Sean Young
Ipswich, Suffolk
Richard Zimbler
Welshpool, Powys, Wales
Professionals
Waseema Azam
BCH, Birmingham, West
Midlands
Virginia Sweeny- Baird
Juliana
Bearsden, Glasgow
Professor James Bainbridge
UCL, London
Julian Thomas
Basingstoke, Hampshire
Sunny Bains
Action for Blind,
Birmingham
Bernie & Andrew Traill
Jonathan
Lisburn, N Ireland
Selina Balloo
BCH, BIrmingham
Emma & Paul Turnbull
Nikita, John James, Summer
& Oskar
Morpeth, Northumbria
Professor Philip Beales
UCL, London
Tim Broome
RNC, Hereford
Joanna Vallance
Carole Vallance
Rosemary Gwinnett
Thorpeness
Anne Cheesbrough
Children & Family Support
Sense, Kidderminster,
Worcestershire
Rachel Wade
Ashleigh Dilnot
Selby, Yorkshire
Dr Sophia Christou-Savina
UCL, London
Rebecca Wilbraham
Gary Colborne
Liz Ellis
University of Birmingham
Christie Emsley
Guy’s Hospital, London
Sarah Flack
GOSH, London
Elizabeth Forsythe
GOSH, London
Kate Gaulton
WESC Foundation
Kjell Arne Hoeviskeland
LMBBS Norway
Jacquie Kearns
LMBBS
Kerry Leeson-Beevers
Alstrom UK
Annika Lindberg
Guy’s Hospital, London
Marie McGee
BCH, Birmingham
Abigail Mance
GOSH, London
Richard Oedegaard
LMBBS Norway
Lesley Porter
BCH, Birmingham
Ray Perry
Benefits Officer, Kent
Hazel Russell
National Blind Children’s Society
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Leah & Thomas
Wendy Sainsbury
National Blind Children’s Society
Paul & Sharon Hartfield
Angela Scudder
LMBBS
Carl Larkin
Steve & Lorraine Maclean
Kath Sparks
GOSH, London
Chloe Maclean
Lola
Lorraine Shaw
BCH, Birmingham
Denise & Alan Nice
Dr. Denise Williams
BCH, Birmingham
Graham & Jess Nice
Leyton
Alan & Denise Nice
Carers
Andy & Caroline Beale
Marcus & Fraser
Martin & Glenda Cleary
Joe Cleary
Harriet Coxhead
Lucie Carter
Matt Nash
Tracy Russell
Braxton Gorringe
Barbara Sales
Anne Beale
Paul Sales
Jane Hollyer
Heidi Seddon
Beth Seddon
Andy & Chrissie Coleman
Carl Jones
Pauline Smith
Karen & Eric Coleman
Mark Waters
Mark Gibson
Jack
Denise Watts
Helen Watts
Jason & Amanda Wilbraham
Mark & Claire Gillman
Evaluation Form
LMBBS Family Conference 17th-19th April 2015
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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5
The Saturday morning programme:
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4
5
Workshops:
Please specify which workshops attended:
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Childcare – Drayton Manor:
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2
3
4
5
Childcare – Creche:
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Children’s activities:
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Evening entertainment:
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5
Meals/Accommodation:
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Which part of the day did you find the most interesting?
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Your suggestions for future conferences, topics, speakers, children’s activities etc:
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Don’t forget you can exchange your completed form for a strip of raffle tickets!
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