Thanks for visiting the page. I finished the ride on 1st July and you can read all about it on the blog. Thanks to all who sponsored me. It is very much appreciated by me and the charity. If you would like to sponsor me the page will be open for a while.
Cornelia de Lange syndrome is a rare genetic disorder that affects about 1 in 40,000 people and is associated with both cognitive and physical disability. Because it is so rare, families and professionals find it hard to access up to date information that can have a beneficial impact on quality of life. This is where a grass roots charity steps in to help when the NHS and other statutory organisations cannot. The Cornelia de Lange Syndrome Foundation (UK and Ireland) supports people who have CdLS and their families and carers by providing (free of any charge) award winning newsletters, a helpline, DVD's, links between families, an 'ask the doctor' service and by arranging family and scientific conferences. Last year the charity organised and part funded international scientific, professional and family conferences attended by delegates and families from over 20 countries. A remarkable, but costly, achievement. You can find more information about the charity at http://www.cdls.org.uk
I have been involved with this charity for 18 years and have been impressed by the commitment, professionalism and achievements of the parents and professionals involved and I want to help the charity to continue providing the high quality support and information that families have come to rely on. So, in June I will be cycling a 1,000 mile route from Land's End to John O'Groats to raise funds that will help the charity to continue its work. I hope you will sponsor me, it's a great cause.
Thanks for taking the time to visit my JustGiving page.
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.
Prof. Chris Oliver, University of Birmingham.
