About SMA Ireland
About SMA Ireland
SMA Ireland is the collective voice for the adults and children in Ireland with Spinal Muscular Atrophy
Our Goals
Established in 2019, SMA Ireland is a voluntary organisation dedicated to raising awareness of Spinal Muscular Atrophy in Ireland and campaigning for access to treatment for all. Time is a critical factor when treating SMA, so one of our top priorities is the introduction of SMA to newborn screening in Ireland.
Supporting those lives affected by Spinal Muscular Atrophy by sharing knowledge, raising awareness and accessing treatment until a cure is found.
Our goals:
Support families by providing information and a network of contacts
Raise awareness and campaign for the disease to be part of Rare Disease screening
Lobby for access to treatment and care
Serve as a liaison between pharmaceutical companies and patient families
Promote ongoing research and coordinate patient volunteers
Initiate and maintain connections with the major international SMA organisations
Meet the team
SMA Ireland relies on the support and dedication of friends and family in order to meet our objectives. This effort is headed by the SMA Ireland Board of Directors:
Chair of SMA Ireland
Karen Mannion
Karen has over twenty years experience in rural and community development. She is the CEO of FORUM Connemara - a local development company and charity which assists people experiencing disadvantage and marginalization through various government funded programmes. Karen is involved in a number of community groups and charities and was a recipient of the 2018 Rehab 'Galway People of the Year' award.
SMA story:
Karen's brother, Gearóid, had SMA Type II and sadly passed away at 21 years. Karen's sister, Sinéad, also has SMA Type II. Sinéad is doing very well and is studying for her PhD and teaching at Queens University Belfast.
Qualifications:
Karen has a BA (Hons), Business and Social Enterprise
Director of SMA Ireland
Professor Emmeline Hill
Emmeline has been at the forefront of thoroughbred performance genomics for more than 20 years and has published numerous scientific papers and other research on the genetics of horses. She is currently professor of Equine Science at University College Dublin where she leads the Equine Exercise Genomics research group, funded by Science Foundation Ireland. Emmeline co-founded the equine genetics company, Equinome, and now serves as Chief Science Officer at the equine nutrition and genetic testing business, Plusvital.
SMA story:
Lifelong friend with SMA Type II
Qualifications:
Emmeline has BA and PhD (mod Genetics) from University College Dublin
Director of SMA Ireland
Jonathan O'Grady
Jonathan commenced his career as a commodity derivatives broker and subsequently worked for various investment companies and online businesses. As well as cofounding SMA Ireland, Jonathan is also a non-executive director on the board of the Irish Wheelchair Association, where he currently serves as Honorary President.
SMA story:
Diagnosed SMA Type II at Hammersmith Hospital, 1982
Qualifications:
Jonathan has a BA (Hons)and MA (Business and Economics) from Trinity College Dublin, and an MBA from Harvard Business School.
Director of SMA Ireland
Paul O’Malley
Paul is a project engineer with more than 20-years experience in medical devices and new device commercialisation. He formerly worked with Oasis International and Boston Scientific, and for the past 14 years has worked at Hollister ULC where he currently serves as Senior Engineering Manager.
SMA story:
Daughter, Grace, with SMA Type II
Qualifications:
Paul has a BTech in Manufacturing Engineering from University of Limerick
Director of SMA Ireland
Shane Whelan
Shane has a background in Genetics and Immunology and transitioned into the world of Data Science and Software Engineering in 2014. He is a Senior Bioinformatics Developer at health science company, Nuritas.
SMA story:
Shane contacted SMA Ireland in 2021 concerned about his son's hypotonia. Theo was subsequently diagnosed with SMA Type I, and was the first child in Ireland to be treated with Zolgensma under the HSE's reimbursement program.
Qualifications:
Shane has a BSc Genetics, MSc Immunology and Global Health and a HDip in Data Science and Analytics.
