James Blockley

Ride London for CdLS!

Fundraising for CdLS Foundation UK & Ireland
£1,119
raised of £1,000 target
by 59 supporters
Donations cannot currently be made to this page
CdLS Foundation UK & Ireland

Verified by JustGiving

RCN 1054033
We ensure early, accurate diagnoses of CdLS to understand CdLS and help those with it

Story

On the 29th July, I will be one of 25,000 people riding 100 miles around London and Surrey as part of the 2018 Ride London festival of cycling.

Akin to the London Marathon, this internationally significant event was launched in 2013 as a legacy of the 2012 Olympics, and aims to encourage more people to cycle more safely, more often.

I will be taking part in the flagship 100 mile closed-road event, whose riders have raised over £17m for various charities over the last four years. My goal is to raise £1000 for CdLS Foundation UK, a charity that exists to promote research into the causes and manifestations of Cornelia deLange Syndrome and help people with a diagnosis to make informed decisions throughout their lifetimes.

There are four main features of this rare genetic condition. Children with CdLS are small at birth and remain small compared with children of the same age. They are all slow learners but this varies from mild to severe, and they can often develop challenging behaviours. Many CdLS children also have limb abnormalities which range from extremely small hands to complete absence of forearms or digits. One of the most striking features of the syndrome however, is that many CdLS children look very similar - almost like members of the same family; which in some important ways they very much are.

CdLS Foundation UK is run entirely by volunteers including parents and professionals, and allows this national and international family to exist. Through twice yearly conferences, the Foundation provides families with the opportunity to meet each other and share experiences. World leading experts in the syndrome attend these conferences and offer seminars and individual consultations. The Foundation also funds ongoing research into the syndrome and publishes a magazine, 'Reaching Out', which covers news stories about research developments, news from families and articles on issues affecting people with CdLS.

My amazing, beautiful nephew Arthur was diagnosed with CdLS three years ago. I have witnessed first-hand the drive and determination required by parents of CdLS children to find guidance, recognition and medical assessment. The CdLS Foundation was a lifeline to Arthur's family in the early stages and will hopefully continue to support them all for many years to come.

However, it relies on donations such as yours to provide this invaluable help and support. I love Arthur, and I love his parents. Please help me to help them and the many other families like them.

Thank-you,

James / Jim.

CdLS Foundation UK: www.cdls.org.uk

Ride London: www.prudentialridelondon.co.uk 








About the charity

CdLS Foundation UK & Ireland

Verified by JustGiving

RCN 1054033
The CdLS Foundation exists to ensure early and accurate diagnosis of Cornelia de Lange Syndrome ; promote research into the causes and manifestations of the syndrome and help people with a diagnosis of CdLS to make informed decisions throughout their lifetime

Donation summary

Total raised
£1,118.41
+ £229.60 Gift Aid
Online donations
£1,118.41
Offline donations
£0.00

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