Christian Bolton-Edenborough

Christian's LMBBS charity cycle around Holland

Fundraising for BBS UK
£1,190
raised of £300 target
Donations cannot currently be made to this page
LMBBS charity cycle around Holland, 27 July 2015
BBS UK

Verified by JustGiving

RCN 1181244
We support people with BBS to to understand their condition and thrive

Story

Thanks for taking the time to visit my JustGiving page.  During the 27th-30th July, I and 8 other cyclists will be cycling 182 miles to raise money for the LMBBS society.

LMBBS or Lawrence Moon Bardet Biedl syndrome as it is medically known is a rare inherited genetic syndrome that affects 1 in 100,000 babies. The main symptoms of the condition have detrimental effects on individuals lives. The most common being the gradual loss of sight, usually beginning with the loss of night vision, increased signs of colour blindness and ultimately total loss of vision. This is caused by the rod and cones in the eyes degrading. Other symptoms caused are obesity and also serious kidney and other organ abnormalities,along with the senses of hearing and smell  also being  affected. Extra digits on both hands and feet can be caused along with learning difficulties for children due to delayed bodily development..

I am hoping to raise at least a minimum of £300, but hope to raise as much as possible to support the amazing work that the LMBBS UK society provide as constant funding is needed to help the  support network they provide. Whether that be through their annual clinics in both Birmingham and London which provide a level of care and medical attention of high quality where specialists of every field of medicine related to the condition come together, so that patients are not constantly sent from one hospital to the next, which leads to a real sense of clarity as to the effects of the condition. The other need is in terms of research. This is because currently there is no treatment for the condition, however there are signs of a potential gene therapy drug that would prevent the progress of the condition. So I hope to be able to make as much of a contribution to the continuing support but also research funds for a cure through my passion for cycling.

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About the charity

BBS UK

Verified by JustGiving

RCN 1181244
We support people diagnosed with BBS, their parents, carers, and siblings as well as professionals involved in all aspects of the care and support of people with BBS in the UK. We are a user-led organisation, represented by adults with Bardet-Biedl Syndrome (BBS) and parents of children with BBS.

Donation summary

Total raised
£1,189.67
+ £213.75 Gift Aid
Online donations
£1,189.67
Offline donations
£0.00

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