Laurence Moon Bardet Biedl Society
|
|
LMBBS Laurence Moon Bardet Biedl Society |
In addition you can receive newsletters and details of our annual conference where families and professionals meet to share knowledge and support.
The annual Family Conference organised by the Society allows our widely dispersed national membership to meet together to share their thoughts, feelings and experiences. More importantly, this meeting offers the only opportunity to learn more about LMBB Syndrome with speakers drawn from a range of interested professionals and advice is given on the management of the various problems associated with LMBBS. Most important of all, members are able to share their hopes and fears with people who understand. For once in the year they are not alone. Parents are not set apart with their 'different' children. LMBBS children are often difficult to manage, especially away from home. Many families cannot contemplate undertaking even a short family holiday. The LMBBS Family Conference is organised so that the whole family can benefit and parents do not have to keep explaining their child's difficult behaviour or disorder. Trained and experienced helpers are always on hand allowing parents to divide their time more fairly between the affected child/children and their brothers and sisters. Outings and activities are provided to stimulate the children while allowing parents and adults to concentrate on the 'business' side of the Conference.
There are no membership fees and no charges are made for information - the work of the Society relies entirely on donations. Please look at our Support Page for details of how you can help.
All newsletters and information pamphlets produced in print are also available in Braille, on audio cassette and computer disk so that they are accessible for our numerous blind members.
Hot off the press is our leaflet produced jointly by ourselves, the Genetic Interest Group, Prader-Willi Syndrome Association (U.K.), Cohen Syndrome Support Group and Alstrom Syndrome UK. (See links for addresses of these organisations).
It is entitled "Has your child a genetic disorder? What do you need to know and from whom?".
The leaflet is full of questions you may want to ask your medical specialist and hints to get through the first visit.
There is also space in the leaflet for answers and notes.
This booklet is a short guide to LMBB Syndrome for parents and friends and covers the questions:
Read this leaflet as a word document Introducing LMBBS.doc (62.0kb) or as plain text Introducing LMBBS.txt (5.43kb)
(Hint: save the leaflet by right clicking on the link)
This publication explains what a teacher of a child with LMBB Syndrome should know. It has been written particularly for teachers and others in the education field who may come across a child with the Syndrome. No one is an authority on this rare syndrome and each child is an individual but there are several shared characteristics which may have a significant effect upon the child's ability to learn, on his/her behaviour or on his/her relationships. If the teacher is aware of the nature of the condition, then he/she is better able to help the child develop skills to his/her maximum potential. The topics addressed in the context of educating the child with LMBB Syndrome are:
Read this leaflet as a word document The LMBBS Child at School.doc (53.0kb) or as plain text The LMBBS Child at School.txt (16.9kb)
(Hint: save the leaflet by right clicking on the link)
The Newsletter is published twice yearly and it covers a wide range of issues for people with LMBBS and their families, carers and professionals involved in the care and management of those with LMBBS. It also gives information about the Society and updates on fundraising, conferences and research. There is always a personal profile and members regularly contribute to the content of the newsletter so expect to find articles on weight management and coping skills.
This medical booklet gives a wider perspective of the Syndrome and has been produced by the LMBB Society in conjunction with the Society's medical adviser, Dr. Philip Beales, Medical Geneticist. It is aimed primarily at medical and healthcare professionals involved in the care of LMBB Syndrome patients, but also for parents wishing to know more about the Syndrome and the implications for those affected. It covers the following topics:
Read this leaflet as a word document More than meets the eye.doc (79.5kb) or as plain text More than meets the eye.txt (25.9kb)
(Hint: save the leaflet by right clicking on the link)