Allison Watson

I live in the UK and have an adult son, David with Ring Chromosome 20 Syndrome, [ r(20)]. I co-founded Ring20 Research and Support UK CIO in 2014 with my colleague Donald Gordon, to provide mutual support and information on r(20) syndrome to individuals, families and healthcare professionals who are affected by or come into contact with r(20). We currently support over 120 families worldwide and our community is constantly growing, despite the perception that diagnostic rates are likely in decline. I am co-lead for the European Patient Advocacy Group) ePAG for EpiCARE ERN and am a EURORDIS volunteer. I recently founded UK RET – a collaboration between many epilepsy patient support groups across the UK who support families affected by rare and complex epilepsies, to see how we might work STRONGER TOGETHER. Due to a career change I now dedicate my time (mostly on a voluntary basis) supporting patients and their families affected by rare and complex epilepsies, speaking at public events and generally raising awareness. I am passionate about improving outcomes and am constantly seeking practical solutions and information to help families manage their condition on a day-to-day basis, alongside trying to raise funds for vital research. We may not have effective treatments TOMORROW, but I believe it is how we live our lives TODAY that matters and how we learn to cope.