The Minutes of the Annual General Meeting on Saturday 24th April 2010, previously
circulated, were agreed and signed.
Apologies for Absence
Apologies for absence were received from Chris Humphreys, the Stone family and the
Election of Officers
The current officers, Phil Humphreys (Chairman), Terry Crotty (Vice Chairman), Julie Sales
(Secretary), Kevin Sales (Treasurer), Chris Humphreys (Conference and National Coordinator),
Anne Crotty (Fundraising Co-ordinator) and Tonia Hymers (Newsletter Editor)
were all eligible for re-election and were duly elected unopposed.
Election of Committee
Of the current committee members, (Richard Zimbler, Tina Hickey, Steven Burge and Allan
Clark), Steven Burge and Allan Clark were due to retire this year. They were both eligible to
stand for re-election and, in the absence of any further nominations, were elected to the
Chairman s Report
The Chairman s Report was as follows:
First of all we have some good news from Jonny and Sharon Fegan, of Newry, Northern
Ireland. Their daughter, Caitlin, had a successful kidney transplant back in December,
donated from Sharon, and they re both doing well. Jonny and Sharon were planning to be
here this weekend but unfortunately had to drop out at the last minute; our congratulations,
love and best wishes go to them all. Congratulations also to Paul and Emma Turnball on the
birth of their fourth child, Oskar, a brother for Nikita, John and Summer. They re all here this
weekend and I should imagine that Paul and Emma are enjoying a much deserved rest.
Congratulations also to Jean and David Hubberstey on the birth of their granddaughter,
Helena Grace, a daughter for Michaela and Sean.
On a sad note, as mentioned previously, the Stone family are unable to attend this year as
Mark is awaiting a new kidney; they all send their apologies and I m sure we ll certainly miss
them. Also, our condolences go to Penelope and Catherine Vagg, whose mother, Joan,
sadly passed away in January. Our thoughts are with them and their family at this time.
The Chairman presented the LMBBS Trustees Annual Report and Accounts:
We have had an incredibly exciting year, with the successful start-up of the Bardet-Biedl
Syndrome Multi-Disciplinary Clinics, across four centres: Birmingham Children s Hospital;
University Hospital, Birmingham; Guys Hospital, London and Great Ormond Street Hospital
for Children. The LMBB Society has set up LMBBS Clinics Limited, employing three support
workers to facilitate and attend these clinics, providing support to those who attend, before,
during and after the clinics. Feedback has been excellent and the first four-centre meeting
will be held in June, to take stock of the first year. LMBBS Clinics Ltd manages the patient
database, with 290 affected adults and children listed. As a direct result of the clinics,
through patient referrals and meeting new families affected with the syndrome, our patient
database has increased by around 90 individuals since the clinics began in April 2010.
The LMBBS membership database is updated regularly to ensure all records are accurate,
in line with the Data Protection Act. Following a recent update, each adult now has their own
entry, more accurately reflecting membership numbers, whereas, previously, they may have
been included on their family page. This has resulted in a big jump in numbers and we now
have 432 members and 155 professionals on our database and these numbers are likely to
continue to grow over the coming year.
In respect of Fundraising, 2010 was a much better year and our thanks go to everyone who
helped the Society to achieve this. We had a Silver Bond runner in the London Marathon
and the Big S Summer Sundae fundraising initiative was well-supported and raised over
£10,000. The BBC Radio 4 Appeal was a success, raising another £10,000, and we thank
the staff at the BBC and their generous listeners for the chance to raise awareness and for
enabling this year s Annual Weekend to take place. We are also pleased to report that,
since the beginning of this year, we have been successful in obtaining grants for £5,000 from
the Foyle Foundation, £2,000 from the Hedley Foundation and £1,000 from VICTA, all
towards this year s Annual Weekend and we thank them for supporting us so generously.
In April 2010, we had a very successful Family Conference, with an excellent line-up of
speakers and workshops. The LMBBS Family Conference 2011 looks set to be bigger than
ever, due to increased interest as a result of the families and professionals we have met
through the Specialist Clinics. It is gratifying to see this very important event continue to go
from strength to strength.
We had an attendance at Sight Village, Birmingham and London, raising awareness of the
Syndrome and Society and also had a presence at the Rare Disease Reception at
Westminster. We will continue to seek out and attend such events as they provide ideal
opportunities for both raising awareness and for linking up with other like-minded groups or
Unfortunately, very few of us managed to attend the Launch of the Ciliopathy Alliance in
November, due to adverse weather conditions, a tube strike and ill health. It was a
successful day, however, and has generated much interest. The Alliance is about to
become a Charitable Company Limited by Guarantee and will have a board of
Trustees/Directors on which we will be represented by Drina and Michael Parker.
The LMBBS webpage has been redesigned, improving accessibility, and now includes a
separate page for the new NHS Clinics, outlining the service and including feedback and
comments received. There is also a chat forum, although this is underused at present. All
LMBBS publications are available via the website.
The overall number of visits to the web
site from 1st May 2010 to 31st December 2010 was 4,853, with 16,028 page views, including
Home page 5,825
About LMBBS 882
We have produced two newsletters and a Conference Report, with a further newsletter in
progress. All of our publications are committed to the health promotion and lifestyle
management issues of those with LMBBS and their families/carers and are distributed to our
members in accessible formats, as well as being available on the LMBBS website. We have
updated the LMBBS Medical Booklet, incorporating recent research findings, and have
updated and reprinted the LMBBS Who are We? leaflet. We have also had wallets printed
which are filled with leaflets and newsletters to welcome new families to the Society.
The Chairman, Phil Humphreys, continued, All of this couldn t happen without the hard work
and commitment of a few individuals. Thank you to Chris, Julie and Tonia for their
contribution to the LMBBS Clinics over the past year; they have worked extremely hard and,
as mentioned previously, the feedback has been excellent. Individually, my thanks go to
Julie for maintaining our web page and for her work as Conference Childcare Coordinator; to
Tonia for her work as Newsletter Editor and Crèche Childcare Facilitator and to Chris for her
work as National Co-ordinator, often the first point of contact for our members and
professionals. As you have probably gathered, we have quite a full conference this year
which is due to the new clinics raising the charity s profile and making more people aware of
us and the work we do. We expect next year to be even busier, so I would urge you to
return your booking forms promptly, to guarantee your room at the hotel. We were lucky this
year that some rooms were made available at the last minute, otherwise some of us would
have been staying at the local Premier Inn.
Huge thanks go to our Fundraising Co-ordinator, Anne Crotty, who has had a very
successful year. Anne is launching a new fundraising initiative this year to raise funds for
the Save Our Conference Kitty otherwise to be known as SOCK . Thank you to all those
who have raised money for the Society this year; your donations have been very much
appreciated for, without you, the Society will not survive.
The Chairman continued by congratulating Allan Clark, who, earlier in the week, had
successfully completed the West Highland Way, covering over 100 miles in five days, raising
a fantastic sum of money for LMBBS. Look out for the full report in the autumn newsletter.
He finished his report by thanking Professor Beales, the Honorary Officers and members of
the Committee and the many volunteers who had given up their time to support the society
for all their support and sterling work over the past year.
Before moving on to the Financial Report, Phil had a personal message to read out from
himself and Chris.
Most of you will know that the LMBBS is like an extended family and, to us, this has never
been more so than in the last five months during Chris s illness. We have been
overwhelmed by cards, messages, emails and offers of help and genuine concern from so
many people, members, professionals and those in the community. At one point, we had 17
bouquets in the home and we had no idea people cared so much. However, there are three
people, Julie, Tonia and Anne, who have supported us over and above, taking on Chris
workload when they were already so busy with their own roles and their families. They are
the sisters we never had.
With tears and hugs all round, Phil presented Julie, Tonia and Anne with the most beautiful
bouquets of flowers, before handing over to Allan who, in the Treasurer s absence, (he was
helping out with the Drayton Manor trip), was to read out the Financial Report.
The financial year 2009-2010 saw a big decline in the Society s
finances, leaving the charity without funds, following the Weekend
Family Conference in 2010. Preparing for the start of the LMBBS
Multi-disciplinary Clinics involved using money from the LMBBS
account, which meant that the final payment owed to the Hilton
Hotel was delayed, until these funds were repaid by the National
Commissioning Group. This is something that has never
happened before and cannot happen again. We re pleased to
report that all costs incurred by the start-up of clinics, paid for by the Society, have now been
repaid in full and are shown on the accounts for 2010. It was reported in last year s annual
report and accounts that there had been a financial loss and that fundraising and support
was desperately needed. This must have had a profound impact as donations and
fundraising have risen substantially compared to previous years, as can be seen in the
accounts, so a big thank you goes to all those who have raised money on behalf of the
Society because, without their efforts, we would not have been able to hold our Annual
Weekend Family Conference this year. Our Annual Weekend was also saved by the BBC
Radio 4 listeners who responded so generously to our Appeal in June, which, with Gift Aid,
raised well over £10,000. Our heartfelt thanks go to them and all the staff at the BBC.
We do, however, still need the continued help of our supporters, if we are to maintain the
momentum and keep driving the Society forward. Thanks to the loyal band of fundraisers,
donors and Friends , the Society can maintain its present activities; however, with more
support, more fundraising and more funds, the Society will be able to develop its objectives
and be able to support its members in more diverse ways.
Appointment of Auditor
It was reported that the Society s accountant, Michael Bannister, had recently left Thompson
& Co to start his own business, Fryza Bannister Financials Ltd. The Committee proposed
that the Society continued to appoint Michael Bannister under his new company, Fryza
Bannister Financials Ltd, for the coming financial year and this was duly agreed.