Charity for January, February and March 2012

Logo used with the permission of LMBBS.

Laurence-Moon Bardet Biedl Syndrome Society

LMBBS is a rare recessively inherited disorder which affects approx 1 in 100,000 babies born. Recessive means that both parents are carriers, and there is a 1 in 4 chance that each baby born has the condition.

The main symptoms of LMBBS are: visual impairment, leading to blindness, extra fingers and toes, obesity, developmental delay, learning difficulties, varying from slight to severe, psoriasis, fatigue, speech and co-ordination problems, kidney problems, arthritis, hormone problems. Other health problems do occur, and vary from person to person and severity.

All families who have a child with the condition have to deal with much illness and heartache, and the support of other LMBBS families is vital. The LMBBS Society relies solely on fundraising, and any grants that it is fortunate enough to receive.

Every year the Society runs a weekend family conference offering a unique opportunity for those with the syndrome, their families and carers to meet and gain information and support. The Saturday offers a full programme of eminent speakers, sharing their knowledge, and research regarding LMBBS. Parents have time to talk to other parents and LMBBS adults to gain more information and support while the children are enjoying themselves on a day out. All our carers are voluntary, and we fund them for the weekend so they can look after our special children/young adults. The Society also funds all LMBBS children/young adults/adults for the whole weekend, who draw strength from being around like minded people and the knowledge they are not coping with this disease on their own.

Our visiting speaker for the LMBBS society at the 10 o'clock service on Sunday, 15th January, supports the charity as a mother of two children with the syndrome: “As a family we have had to deal with much illness and heartache, but without the support of other LMBBS families, and our own family and friends I am not sure we would have coped.” With your generous help, these families and adults can continue to receive the support they need.

Logo used with the permission of LMBBS.

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