Louise Butcher

LouLou's Marathon Page

Fundraising for BBS UK
£1,519
raised of £1,500 target
by 24 supporters
Donations cannot currently be made to this page
Event: Virgin London Marathon 2010, on 25 April 2010
BBS UK

Verified by JustGiving

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

Story

Updated on May 9th 2010 at 9:00 PM using the JustGiving iPhone app

Thanks to everyone who donated through Just Giving or on the sponsorship forms. It's a great total for LMBBS I'm chuffed to bits! By the way I Completed the 26.2 miles in 5hours 19 mins x x

Thanks for taking time to visit my JustGiving page. 

On 25th April 2010 I am running the London Marathon and am hoping to raise lots of money for LMBBS the Laurence-Moon-Bardet-Biedl Society.  www.lmbbs.org.uk

LMBB Syndrome is a rare genetic disorder, which affects approx 1 in 100,000 babies born.  The features include visual impairment (usually leading to blindness), obesity, extra digits, kidney abnormalities (often leading to transplant), developmental delay and many other health problems.

The LMBB society is a registered charity which provides support and information to those with the syndrome, their families and carers, as well as doctors, healthcare workers and other interested professionals.  The society is run by volunteers and relies on donations and fundraising to keep it going.

So why am I running in support of this charity?  Well, Danielle (18) and Hollie (15) are my second cousins, both girls were born with LMBBS and have had to overcome many challenges as they have grown up, challenges which many adults would struggle to deal with.

Things were difficult for Danielle when she was younger, she had to be on a restricted diet, alongside behavioural issues and learning difficulties. She had coordination problems and chronic fatigue, which made exercise very difficult.  Danielle worked her way through all of these challenges with the support of her family.  She is a strong, independent, determined young woman with a heart of gold who is now on a mission to pass her driving test.

Hollie is currently coming to terms with losing her sight.  Life without sight, I think most if us cannot even imagine what this would be like.  Hollie, however, is an inspiration.  It has not been an easy journey for her, or for her family (my cousins Julie and Kevin and of course Danielle), but with their continuous support she is building up strategies to help her cope with her everyday life. 

Having watched Hollie and Danielle grow up with LMBBS, I wanted to do more, get more involved with the charity and help out as much as I could.  I try to attend the LMBBS conference every year as a carer and, here, I see the invaluable support the charity offers to families living with the syndrome.  This year, however, I will be unable to attend as I will be pounding the streets of in the hope of raising as much money as I possibly can to support them. 

So please, help me by donating to LMBBS through this JustGiving website and please add your home address and postcode, without this LMBBS cannot collect GIFT AID.

Thank you xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

 

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
£1,518.40
+ £166.81 Gift Aid
Online donations
£631.40
Offline donations
£887.00

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