Emma’s son Charlie was diagnosed with HH when he was 8, after years of misdiagnoses. As a result of her experience she joined Hope for HH as it was set up and has worked with the other Directors to support patients and caregivers, to spread awareness amongst the medical profession and to find a cure for all aspects of this syndrome. Emma is based in the UK and in 2015, together with two fellow Brits affected by HH, set up Hope for HH-UK and remains a trustee of this British arm of the organization. Since 2018 Hope for HH-UK has been a member of EpiCARE, the European network for the rare and complex epilepsies. Emma has been secretary of the EpiCARE patient advocacy group since 2019, working with representatives of other rare epilepsies for the common good in the European Union and beyond. Charlie has two sisters and, when not parenting or advocating for Hope, Emma works full time in the legal profession.