We are delighted to have welcomed three new organisations into our fold:
- MDA Hellas (Greece)
MDA Hellas is a muscular disease association founded in 2000, which focuses on improving the lives of individuals with neuromuscular disorders: not only on forging a lasting working relationship with government agencies and on enlisting the help of private institutions and individuals, but also on furthering research that will help fight neuromuscular disorders. It is a non-profit organisation with 11 staff members that supports and educates doctors, organises events and education programmes for patients in matters of advocacy, clinical trials, novel medicines and technologies. The organisation promotes clinical research and early diagnosis. It has established and supports 3 Specialised Neuromuscular Units in Greece and cooperates with major institutions, world organisations for neuromuscular disorders and universities from Greece and abroad.
MDA Hellas will be represented by:
Antigone Karras, the organisation's CEO, has been in the neuromuscular field for over 18 years. She works on the creation, communication and implementation of the association’s vision, mission and overall direction. She leads the development and implementation of the association’s overall strategy. She advocates and communicates with state agencies, ministries in Greece and pharmaceutical companies. She played a key role in the foundation of 3 multidisciplinary NMD units in Greece and she is responsible for their smooth operation. Furthermore, she is liable for the “Home of MDA Hellas”, directing all personnel and organising all fundraising events, social activities, raising awareness activities, scientific conferences.
Eugenia Oikonomidou, is the organisations' Scientific Advisor and has been in the neuromuscular field for 6 years. Eugenia is a Biochemist, with an MSc in Molecular Medicine and Inorganic Chemistry and a Bachelor’s degree in Nursing. She works on the latest news on research, clinical trials and standards of care.
Georgia Moraiti, the organisation's social worker since 2014, has an MSc in Public Health – Chronic Diseases and Health Behaviours in progress. Her main responsibilities include needs assessment, informing and supporting patients about their rights, interconnection with health and welfare services, school counselling and intervention, organising educational and entertaining events.
- SMA Ireland
SMA Ireland was established in 2019 and is the collective voice for the adults and children in Ireland with spinal muscular atrophy. The organisation supports the people and families affected by: providing information and a network of contacts; raising awareness of SMA and campaign for screening; lobbying Government and the Health Service for access to treatment; liaising between pharmaceutical companies and patients/families; facilitating ongoing research by coordinating patient volunteers and maintaining connections with SMA organisations in other jurisdictions.
SMA Ireland will be represented by:
Jonathan O'Grady, the organisation's Director, was diagnosed with SMA type II at Hammersmith Hospital in 1982. Jonathan commenced his career as a commodity derivatives broker in London and then Geneva. He subsequently worked for investment companies in Dublin, before joining the online bookmaker Paddy Power Betfair plc. Since 2014, Jonathan has served as a data and strategy consultant. Jonathan has a BA (Hons) and MA (Business and Economics) from Trinity College Dublin, and an MBA from Harvard Business School.
Emmeline Hill, also a Director of SMA Ireland, has a lifelong friend with SMA type II. 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. Emmeline has a BA and PhD (mod Genetics) from University College Dublin.
Paul O'Malley, also a Director of SMA Ireland, has a daughter, Grace, with SMA type II. 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. Paul has a BTech in Manufacturing Engineering from University of Limerick.
- SMA Foundation Hungary: We look forward to introducing you to the Hungarian organisation and its representatives very shortly.