The Board of PWSAI is made up of Chairperson, Secretary, Treasuer and Charity Trustees. We are supported by a National Development Officer, Family Liason Officer and many others who provide their time and expertise where needed. All members of the Board of Trustees are unpaid volunteers who give up their time for the benefit of PWSAI.
Rory has been involved with PWSAI since 2013 soon after his son Henry was born. Henry was diagnosed with PWS in 2012. He was involved in the organisation of the 2014 Galway cycle fundraiser before joining the board in 2015. Rory has organised many fundraising activities for PWSAI as well as the PWS5k. Rory has served as Vice Chairperson since 2021.
Rory has a BA degree from NUI Maynooth and has worked in many areas of retail management over the last 15 years.
Rory lives in Galway with his wife Emma and sons Henry and Billy.
In 2022, Rory was voted in as Chairperson of PWSAI.
PWSAI Vice Chairperson
Derek lives in County Louth with his wife and 3 daughters. Derek’s youngest daughter Laura was born in 2014 and was diagnosed with PWS shortly after birth.
Derek holds a Degree in Engineering and a Masters Degree in business administration. Having developed skills in Strategic Management and Operational Efficiency, he has held several senior management roles over the last 15 years. Derek is currently the Managing Director of a Global Business Unit within a multinational company.
In 2016, Derek joined the board of Prader Willi Syndrome Association in Ireland. In 2022, Derek was voted in as Vice Chairperson of PWSAI.
Emma lives in Galway with her husband Rory and sons Henry and Billy. She has a degree in Genetics and Bioinformatics from NUI Maynooth. Emma has worked in administration and management and joined the board of PWSAI in 2013. Emma is the current secretary of the association and is a point of contact for many families. Emma is a co-founder of the PWS 5km.
Emma’s first child Henry, was born in 2012 and diagnosed with PWS shortly after birth.
Sean lives in Dublin with his wife and 3 daughters. His second daughter Aoife was born in 2008 and was diagnosed with PWS shortly after birth.
Sean has a degree in Civil Engineering and a Masters Degree in Structural Engineering and has managed a variety of construction projects in both the UK and Ireland. Currently Sean is working as a Senior Executive Engineer with a Local Authority.
Sean has been involved with PWSAI since 2011 and has been Treasurer since 2013.
Anthony lives in Kildare with his wife Caroline and children James and Lauren. Lauren was born in 2008 and was diagnosed with PWS soon after.
Over the last 25 years Anthony has worked across Semi-conductor, Medical Device and Sports industries for various multinational companies. These roles have been in the area’s of operations, project management, Research and Development and manufacturing management. The experience Anthony has gained in his professional career has given him the management skills and expertise, which are beneficial to the needs of PWSAI.
Anthony served as Chairperson for PWSAI from 2010-2022.
Jane is married to Ted and they have four children: their youngest, Laura, aged 22 years, has a diagnosis of PWS (UPD). Originally a teacher of Ancient Greek and Latin, Jane developed an interest in Special Education following Laura’s birth. Her Special Education teaching experience is primarily in Severe Profound Multiple Disability and she has taught pupils with a variety of rare syndromes. Jane lectures part time on Special Education for the B.Ed Montessori in SMSI and is an annual guest lecturer on PWS on DCU’s Higher Diploma in Special and Inclusive Education.
Jane is a member of the National Working Group on Prader-Willi Syndrome. Jane joined the Board in 2020.
Don Tallon was reappointed as a Director of PWSAI in March 2020. He is also a member of the PWSAI (Residential and Respite R+R committee). Don is one of three founder members of PWSAI. He was until his retirement a part owner and director of an SME engaged in Blinds manufacture based in Dublin.
Don is dad to Richard who has PWS and who has lived in PWS specific Residential Care in the UK and Ireland since 1997. Don has previously served on the boards of PWSAI, The Rehab Group, RehabCare and IPWSO. Don has taken particular interest in the development of PWS care specific Clinical, Residential and Respite Care services for those who live with PWS. He has wide experience of models of service delivery in this area over many years in Ireland, the UK and within Europe.
Yvonne is based in Sligo and has an honours degree in Management and Business Studies, from Queen’s University Belfast. Yvonne has worked in Operations, on a National level for almost 10 years. Her most recent role has provided consultancy to both public and private sector businesses. Yvonne’s daughter was born with PWS in 2019. Yvonne joined the board of PWSAI in 2020.
Ann joined the board in 2020.
Many families with links to PWS will know Ann from her role as Clinical Nurse Manager specialising in Endocrinology in Children’s Health Ireland (CHI) at Tallaght.
Ann has worked in the endocrine department for 15 years developing a strong interest in working with children with PWS and their families.
Ann’s greatest achievement in her time working with PWS has been the development of the multidisciplinary clinics. The involvement of psychology, play specialists, dieticians, dentists, physiotherapists, nurses and doctors as a one stop shop has greatly improved the family’s experience according to feedback.
There are many improvements still to be made to improve the quality of life for children and their families, Ann strives to be instrumental in implementing these.
Mary joined the board in 2022.
PWSAI Family Liason
Email: firstname.lastname@example.org Phone: 087 252 2832
Ann is the PWSAI Family Liason. Ann has a wealth of knowledge in the practical day to day living with PWS and can offer lots of support and advice to families from new diagnosis, to healthy living with PWS at home, through to practical supports in school and adulthood. Ann lives in Cork with her husband Ray and five children. Ann’s eldest son Oisin has PWS and was born in 2005. Ann has served on the PWSAI board in the past but currently is a volunteer.