Christian Cottet is Chief Executive Officer of AFM-Téléthon. He is the father of a 25-year-old girl with SMA and has been involved in AFM activities for 22 years, first as a volunteer and now as CEO. In 1987 he launched the SMA patient group within AFM along with other parents, and he regularly participates in the GRAM, a French working group including patient representatives, scientists and physicians to accelerate translational research to find a cure for SMA. He represented AFM in the creation of SMA Europe. After 19 years as a volunteer in AFM he left his vice-presidential mandate to become CEO of AFM. Today he is involved in all AFM activities, not only for SMA but for all its neuromuscular and rare disease activities.
Inge Schwersenz has a son with Spinal Muscular Atrophy and wants to make sure that patients in clinical trials are not exposed to any harm and their confidential data are truly protected. On the other hand, she wants to make sure that there are no unreasonable delays in promising clinical trials and finally market authorisation (regulatory agencies, approval in the single countries and reimbursement from the health insurances). Another motivation is to see standards of care applied in every country. Inge is a member of the RD Patient and Ethics Council (RD-PEC) and a member of the DITA Taskforce (Drug Information, Transparency and Access) at Eurordis.
José-Luis is father of 3 children, one of them is a type-2 SMA boy. Since the diagnosis of his son in 2003 he and his wife María-José (doctor) started to work with other families to promote the biomedical research about SMA. In 2005, he co-founded FundAME, the SMA Spanish association, where currently he is a member of the board. José-Luis has a bachelor in Law, a Ph D in Economics and is a chartered auditor. He has worked as banking supervisor, CFO and consultant in the banking sector, and external advisor for the IMF.
Georgia is a Social Worker at MDA Hellas – Muscular Dystrophy Association in Greece since 2014. Georgia has an MSc in Public Health – Chronic Diseases and Health Behaviours in progress. Her main responsibilities are needs assessment, informing and supporting patients about their rights, interconnection with Health and Welfare services, school counselling and intervention, organising educational and entertaining events.
Stefania is the Scientific Advisor at MDA Hellas – Muscular Dystrophy Association in Greece. She is a Biologist who has worked for 10 years in Laboratory Research on Neurodegenerative Disorders. Her main responsibilities at MDA Hellas are to keep track of scientific publications, clinical trials, drug approvals, conferences, events regarding neuromuscular disorders, being in contact with medical staff specialising in the NMD field, being in contact with international organisations and support patients and caregivers with any relevant information.
Lise is a mother of four children, one of whom has SMA II. In 2018, she was elected to the Board of Representatives of the Danish patient organisation for neuromuscular diseases, Muskelsvindfonden. Through her voluntary work in the organisation, she seeks to improve the everyday lives of children and adults with NMD. She is also a member of one of several parent groups within Muskelsvindfonden in relation to which she organises various activities for families of children with NMD. Professionally, Lise holds a master’s degree in English and a BSc in mathematics and works as an upper secondary school teacher.
Sara is 40 years old, living with SMA type II. She lives in Sweden with her husband and stepchild.
She is vice chair of the Swedish organisation for SMA, NSMA. Sara is working to increase patient influence in the Swedish health-care system and for patients with SMA to get access to effective therapies. She believes that there is much work to be done for SMA in the life-science area.
Sara works as a cytotechnologist and quality manager at the department of laboratory medicine in the Swedish region of Ostergotland. She tries to inspire people with her blog, where she shares tips and ideas for good nutrition and ways to exercise with SMA, and through her role as a leader in courses of learning and coping for patients and parents.
Véronique Van Assche has a Master’s Degree in biology and economics. She was born in 1977 in Brussels and she is affected by SMA type III. She lives in Belgium and is involved with SMA Belgium, the Belgian Association against SMA. She is also lobbies to find solutions to offer a good quality of life for people that are affected by this disease. In her professional life, she works for Wallonia Public Service as a Political Expert in Economics, Employment and Research. She is also interested in rare diseases and European issues.
Václav Hradilek is a Hydrologist and assistant at the Czech Live Science University and Head of the Czech SMA Patient Organisation, SMÁci.
He lives with his family in the Prague suburbs and his daughter, Božena, has SMA Type I.
Honza was born in 1974 and was diagnosed with SMA Type 3 as a child. His younger brother also lives with SMA Type 3. Honza is in a wheelchair and lives an active lifestyle.
Honza has a Master’s Degree in International relations – European studies and an MBA diploma (Strategic management).
Honza works full time, many years in the banking sector, after which for the biggest Telco operators in the Czech Republic (consumer finance and revenue assurance). Now, he works for Mercedes-Benz, having started 9 years.
Honza is a team player, easygoing and his life motto is simple: “Never give up”. In his free time he loves to travel and is a self-confessed geek 🙂
Honza also likes to help on a voluntary basis. He has been actively supporting a project which returned patients after an accident back to life.
Pia is a mother of three children. Her first born daughter (born 2008) has SMA type 2. Pia is one of the founders and chairman of SMA Finland that was established in 2018. Pia is a caregiver to her daughter and also an entrepreneur. Her company helps people in business strategies and marketing. Pia is dedicated to work for equality and access for medical treatments to all SMA patients in Europe.
SMA story: lifelong friend with SMA type II
Position: Director, SMA Ireland
Career: 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.
Qualifications: Emmeline has BA and PhD (mod Genetics) from University College Dublin
SMA story: Daughter, Grace, with SMA type II
Position: Director, SMA Ireland
Career: 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.
Qualifications: Paul has a BTech in Manufacturing Engineering from University of Limerick
Simon grew up in India and the UK and is a British and Swiss national. He has held various international senior management and board positions in the airline and IT industry, and is currently Executive Advisor to the Management of a German multinational corporation. His hobbies are jogging, reading and music.
Simon has a daughter, Sandra, born 1981 with SMA type III. Sandra has studied Social work at the University of Applied Sciences and is a social worker at the Swiss Muscular Dystrophy Society.
Besides his primary role of working on projects and representing the philosophy within SMA Europe, he will actively support Nicole in her overall objectives with the coordination of SMA Schweiz and SMA Europe.
Olivera Jovovic is a graduate economist, one of the founders of the SMA Serbia association. She is a mother of two children. Her youngest one, Matija, has spinal muscular atrophy, type 2. Olivera was chosen to be the president of the association. She works hard to ensure that all patients with SMA, children and adults, get treatment. Her effort is best represented in everything she did for the most vulerable patients. Through her devotion, she improved the condition of medical care in Serbia, especially in order to ensure that all patients receive the equipment they need. Working with adult SMA patients, she brought the most famous pharmaceutical company, Biogen, to our country, and together with association members, managed to acquire Spinraza™ for 17 children, including her son. This didn’t stop her, so with willingness and perseverance, cooperatively with the association and doctors, she succeeded in involving eight patients in Roche’s experimental drug study. She also succeeded in arranging a meeting with the Serbian President and the Minister of health. Olivera’s ultimate goal is to get a cure for all SMA patients in our country, with a special awareness on adults, which are rarely centre of attention.
Angela Smith-Morgan is the CEO of SMA UK.