We are a self-help group of parents for parents whose children were born with Angelman syndrome. Our group was founded in 2011 and helps parents with Angelman children to better understand the diagnosis, to accept it and to cope with everyday life with their “angel”.
The current day to day running of the charity is overseen by a group of parents to young children with Angelman Syndrome. We are backed and supported by a voluntary advisory board, recognised in their respective fields of paediatrics, clinical trials and finance and charity governance.
Anna joined the charity in 2024 and is a Clinical Trial Project Manager in academic research. Anna has a BSc in Pharmaceutical Science and has 14 years experience in clinical trials in both industry and academic research, ranging from early Phase I through to Phase II and III studies. Anna and her husband have two daughters, their youngest Róisín, aged 4, lives with AS.
Annette Kent joined the charity in 2015 and has over 25 years of leadership experience in clinical research, pharmaceutical, and medical device sectors. She holds a PhD in Pharmacology and completed the BioInnovate Fellowship in 2016. Throughout her career, Annette has gained extensive expertise in clinical research, biotechnology, and healthcare solutions. Annette has held Clinical Director roles in a number of medtech companies, previously with FIRE1 and now with Endowave where she leads the development and implementation of early-stage clinical trial programme.
Annette is aunty to Pierce (21) who has AS.
Crystal joined the charity in 2024 and has a background in software engineering. She is passionate about advocacy for Angelman and creating opportunities for families to have access to a higher standard of support, to early diagnosis and community. She has 2 boys – Arthur who is 2 and Tomás (Mossy) who is 5 and has AS (del+).
Professor Kevin Dunne is currently the Professor of Paediatrics and Head of the Department of Paediatrics at the Royal College of Surgeons in Bahrain, with over 30 years of experience as a paediatric consultant in Aberdeen, Ipswich, and University Hospital Galway. He was the lead consultant in the child development teams in these areas.
Robert has been on the Board of Angelman Syndrome Ireland since 2012. His particular areas of expertise are governance, risk management & compliance. He qualified as a chartered accountant in 1984 and has worked in financial services in Australia, the UK & Ireland for the past 40 years.
Angelman Syndrome Ireland is a registered Irish charity (CHY Exemption Number: 21101) Registered Charity Number (RCN) 20084066. We are committed to maintaining the highest standards of governance to ensure full transparency in how we operate. We are fully compliant with all relevant Irish charity legislation and regulatory frameworks.
Our governance journey to date, we are:
Angelman Syndrome Ireland is dedicated to supporting individuals and families affected by Angelman Syndrome through advocacy, education, and research. Our mission is to raise awareness, promote understanding, and improve the quality of life for those impacted by this rare genetic disorder.
We are committed to providing a compassionate community, offering resources and support, and driving research efforts toward better treatment options with a strong focus on emerging therapeutics and clinical trial readiness. Through collaboration with the HSEs medical professionals, researchers, pharma and other supporting organisations, we strive to bring hope and create meaningful change for individuals with Angelman Syndrome and their families.
