Julie has been a full-time volunteer for almost 20 years and has extensive experience of working with researchers, those delivering services to families and other non-profit organisations. Julie founded Max Appeal in 2001, following the death of her son, for people with 22q11.2 deletion syndrome. She became a trustee of the Children’s Heart Foundation (CHF) in 2003 and is now chair. Julie joined the Cardiovascular Care Partnership (UK), the patient arm of the British Cardiovascular Society, in 2008. Max appeal acts as the secretariat to the All-Party Parliamentary Group for 22q11 Syndrome and the International 22q11.2 Society for professionals, researchers and experts with an interest in 22q11 deletion syndrome. Julie also attends specialist clinics to support families at various hospitals in addition to representing 22q11 deletion syndrome patients on many committees and groups.