Story
Thanks for taking the time to visit my JustGiving page.
I am putting my running shoes back on after a long break and aim to complete my first half marathon. I am hoping to raise money for the CdLS foundation uk, our gorgeous little Arthur was diagnosed with a rare genetic syndrome last June called Cornelia de Lange syndrome and the CdLs foundation provided us with information when we felt a little lost. The foundation hosts two weekend conferences each year which give families the chance to get together, talk to specialists, attend talks and generally share stories. This service is invaluable as few paediatricians are fully aware of this syndrome and the conferences make sure families are informed of any new developments as well as providing a much needed support service. All of this is only made possible by charitable donations.
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