As the Laurence-Moon-Bardet-Biedl Society enters it’s 21st year, it seems the ideal time to have a look back to its humble beginnings and to acknowledge the work of the LMBB Society.
The first meeting in 1987 was a pilot meeting held at Hethersett College together with the British Retinitus Pigmentosa Society (BRPS). The meeting was facilitated by a representative from ‘Contact A Family’ and there was just a handful of parents present. In 1988 a further meeting consisted of the group trying to form a committee to get the Society up and running, independent of BRPS, who wanted the LMBBS to become a BRPS branch.
Drina and Michael Parker and Chris and Dave Stoves, who were part of that early group, were determined that the LMBBS should be an entity in its own right and, in 1989, the first Conference style meeting was held at Hetherset College. It was attended by just 25 parents, 2 grandparents and a sister of someone with LMBBS. There were just two adults with the syndrome, 3 specialist speakers, a physiotherapist and a representative from Contact A Family. Today, the Society supports over 200 families and communicates with over 250 professionals involved in their care, and that early desire for independence is as important to the Society today, as it was then.
Over the years, the Society has produced leaflets aimed at promoting the welfare of those with LMBBS. ‘Introducing LMBBS’ and ‘The LMBBS Child at School’ were produced early on and have been updated and reprinted as needed. The Medical Booklet, produced a little later, was aimed at the medical profession and provides a more in-depth look at the syndrome. The latest publication is a leaflet about the Society itself, and can be used both to raise awareness of the Syndrome and also as a hand-out when fundraising. Soon to be available, are two leaflets containing updated information, which will eventually be incorporated into the medical booklet. The committee has been working with Professor Beales and in particular Ms Helen May-Simera to produce the two leaflets, which explain ‘genetic inheritance’ and ‘cilia’ research.
The Newsletters and Conference reports have always been an important aspect of the work of the Society and are intended to keep it’s members informed and supported, and hopefully, ease the feelings of isolation that can occur with such a rare syndrome. In addition, the leaflets are distributed at events such as ‘Sight Village’ in a bid to raise awareness amongst professionals and those who have the Syndrome, but who perhaps have never come across the Society. Our helpline is also a lifeline to many, especially for the newly diagnosed, and is a chance to talk to someone who understands.
The Annual Family Conference is also an excellent source of information and support, and attracts many emminent speakers from across the globe. The children and young adults benefit hugely from being part of a group where they are no different to anyone else. It is the excellent childcare team that makes the Conference such a ball for the youngsters, with many of the team now very experienced, having volunteered for several years. The ratio of child to carer is always planned with total inclusion, optimum safety and of course lots of fun for the children, in mind.
Around ten years ago, the Society, together with Professor Beales, produced and sent out questionnaires to all its members. Professor Beales used the information from this study to produce the main diagnostic criteria, which is now used world wide. In more recent years, members of the Society have had the opportunity to assist many medical professionals in their quest to understand more about this condition during Conference weekends. Professor Hammond took photographs, using special 3D face imaging, to see if face shape could assist in diagnosis and, more recently, Dr Daniel Jagger used questionnaires and hearing tests to study hearing in LMBBS, with ‘interesting’ results pending. Professor Beales outlined in his talk at Conference 2007, how awareness about the condition has been raised significantly over the past decade, and both he and other professionals consistently thank the members of the Society for their contribution.
The work of the Society is never more obvious or appreciated than when going through the horrors of diagnosis, however there are many times when a friendly ear or information and support are needed. Life changes are much harder to deal with when trying to cope with a condition like LMBBS and it is during those times that the helpline, Conference, leaflets and Newsletters come into their own.
The aims of the Society, according to its constitution are: to preserve and protect the health and promote the welfare of persons suffering from LMBBS, and to advance the education of the medical and educational professionals and the general public on the subject of LMBBS. It is the responsibility of the Committee to fulfill those aims and to keep the Society moving forward. Just like in the beginning, the committee is made up of those who have children/grandchildren with LMBBS and also those who have LMBBS themselves. They willingly give up their time to provide support, raise awareness, raise funds and generally do as much as they can to keep the LMBB Society moving forward, in the spirit of it’s humble beginnings.