Steve was diagnosed with BBS at eleven years old, lost his vision at the age of 21 and has been involved with the Society since 1997. Music has always played a big part in Steve’s life and he credits his love of music, especially his drumming, with helping him cope with having the syndrome. In 2000, Steve qualified as a sound engineer from the Royal National College in Hereford and has since been involved in numerous professional recording projects, both as a drummer and as a sound engineer.
Steve is currently the only blind drum tutor of the Drum Sense teaching programme and is involved in numerous recording and teaching projects. Steve has been a member of the BBS management committee since 1997 and has devoted his time to supporting and advocating for adults and families affected by BBS, promoting the positive life style that can be achieved despite the many challenges of living with the syndrome. Steve was elected as Chairman in April 2015.
Hi, I am Richard Zimbler and I am 31 years old. I was diagnosed with BBS when I was 6 years old. I have been on the BBS committee now for 6 years and have recently taken up the post of Vice-Chairman
My hobbies entail watching all sports, including football, rugby union , rugby league, tennis, boxing, WWE wrestling and I really enjoy watching darts as I am a big fan of Phil ‘The Power’ Taylor – he is one of the best darts players in the world.
I enjoy my various different voluntary roles as well. I am a volunteer for the Royal National Institute for the Blind in Wales on a project called Online Together.
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 23 and Greg is 19. 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 BBS UK after Maria was diagnosed with BBS at age 14 and we attended our first conference 6 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 am mum to Jessica who is 16 years old. She was diagnosed with BBS7 four years ago and ever since then everything has made more sense to us. This is our 3rd year at conference and each time I learn something new which only supports us in our BBS Journey. We have been welcomed into the BBS family and have truly embraced it.
Two years ago I was diagnosed with multiple sclerosis and I did and still am evaluating my path. I have realised that I have a lot more to give in many different ways and I would like to support BBS UK in any way I can for as long as I can as it is such a vital support network to myself and Jessica and to us all.
I have worked in the charity and voluntary sector for ten years and have had various roles in management, finance, fundraising, project coordination, administration and have previously been a secretary for a management committee. I recently went back to college and have an AAT level 4 qualification in Accountancy and for the last two years I have worked as a Freelance Bookkeeper. I have gained a wide range of experience and knowledge from the roles I have had and from the different types of charities I have worked for which include the arts, environment, community and children services. I have very much valued and learnt from the diversity of these different types of organisations over the years.
I was asked last year to be an observer on the Board of Trustees and in June 2015 volunteered to become acting secretary to BBS UK. I have valued learning more about the charity and I am looking forward to the opportunity of working alongside a great team of Trustees and Employees for an invaluable Charity. I feel I understand the difficulties charities can face and the vulnerability of this sector and think I can help support the charity in many ways to aid in its sustainability, growth and development now and in the future.
Emma is married to Steve and together they have two children who both have BBS. They run a touring caravan park in a pretty village in North Yorkshire, where they live with their dog, cat and an array of ‘outdoor’ animals. Steve also runs a plumbing business.
Emma and Steve’s children Tom (15) and Katie (13) are supported within a mainstream school in Harrogate. Tom is studying for GCSE’s and enjoys reading about history and listening to music. Katie is currently in Year 8 and is in the football and hockey squads at school, she also likes swimming and to spend time horse riding at the weekends.
Emma and Steve have been involved with the BBS society for fourteen months and this is their second Family Conference.
Rob is married to Tonia and together they have two sons, Daniel (19yrs) and Connor (15yrs). Daniel has BBS. Rob served as a BBS UK Trustee for many years and has been providing background support to the charity since his retirement from the board in 2006. Rob is a Stevedore (Docker) at his local port and enjoys the many different challenges this throws at him.
Dianne Hand has been a Trustee since April 2015. George, the youngest of her two sons, was diagnosed with BBS at the age of 14 in 2010. After receiving tremendous support from the Society she wanted to show her gratitude by helping the Society and supporting others. Dianne has been a teacher for over 20 years and is currently a Special Needs Co-ordinator in a primary school in Stockport. She has been volunteering as a contact for BBS families regarding SEN issues in education, as well as passing on useful advice and information from Stockport’s Sensory Support Service via the Newsletter and website. When possible, Dianne attends the Family Conference weekends which are an excellent opportunity to meet up and share experiences and talk about where it is felt support is needed.
My name is Graham Longly. I’m 47 years old and live in a small town called Haxby about five miles from the centre of York where I run my own assistive technology training and consultancy business.
I was diagnosed first with RP at the age of eight and then with LMBBS at 18 having lost the majority of my sight during my teenage years and also having had a kidney removed. Since being diagnosed with LMBBS I have studied to post graduate level in business related subjects and worked in Marketing, Personnel and broadcasting before setting up my own business.
In my spare time I enjoy travelling both in the UK and abroad, watching live music and general social activities. I am also a keen follower of British Premier league football.
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 studied Politics at the University of Portsmouth.
My name is Margarita Sweeney-Baird and I have 3 children. Christina who is 23, Kenny who is 16 and Juliana who has just turned 13. Juliana has very recently been diagnosed with BBS 1 and now that we are firmly established by the genetic tests as being part of the BBS community you now have a captive supporter. Quite simply no matter how busy I am I will do as much as I can to help the BBS trust and the community. I truly understand how difficult life is for the BBS patient and their families and joining the BBS community I finally feel that we belong somewhere.
My skills are legal and sporting. I was Scottish Ladies Figure Skating champion and a top Law Student at Glasgow University. I was awarded a John F. Kennedy Scholarship to study at Harvard where I obtained my Masters in Law.
The Kennedy Scholarship introduced me to the world of disability sport and I have set up a charity to run inclusive skating events for skaters with any form of disability. I hope that my skills at building new events and opportunities for skaters and athletes with disability can also be used to help the BBS Charity.