Nicole Gusset’s first-born daughter Victoria was diagnosed with SMA Type II in 2011. As a result of this, Nicole started her activities in patient advocacy. Alongside her work at SMA Europe, Nicole is very active in the patient advocacy space. She is Founder and President of SMA Schweiz, EUPATI Fellow, President of the Swiss Neuromuscular Diseases Association and member of various Swiss Committees and Advisory Boards.
As a patient expert, Nicole strongly supports evidence-based patient advocacy and is committed to the best possible research in drug development and care, as well as the access to these for all patients.
Systematic needs assessment in people living with SMA help to identify patient-relevant gaps but only by working together with all stakeholders in the area these can be filled for the benefit for all patients. Nicole is working to ensure that the patient experience and expertise is held paramount by key stakeholders. But also, to ensure that individual patients have comprehensive information to make informed decisions about therapies and care.
Nicole studied Biology at the ETH Zurich, Switzerland and earned her PhD in behavioural ecology in Berlin, Germany and the Serengeti, Tanzania. After her degree in Environmental Law, she then worked for several years at the Swiss Federal Veterinary Office as a scientific officer and deputy head of the unit dealing with bilateral agreements with the European Union. Currently, Nicole is employed at the University of Zurich as a scientific programme manager in Ecology.
Eva is mother of 2 adult kids. Her 22-year old daughter Sarah has SMA II.
She is a long time patient contact person within the DGM e.V. and also supports the Initiative SMA whenever help is needed. Since September 2017, Eva is a participant of the 3rd cohort of the EUPATI Patient Expert Training Course on R & D in medicines (together with Nicole from SMA Switzerland).
On a professional level, she works as a lawyer, supports her husband in the family business and is member of a local housing board.
Marie-Christine is the mother of a girl affected by SMA. She is a member of AFM Board of Directors, AFM international committee and TREAT-NMD Project Ethics Council.
I am the mother of a young girl diagnosed with Type II SMA. Because of the lack of information and awareness about SMA in Romania I decided to found the association that will bring some light in the life of SMA patients. Beside me are more parents who are willing to fight for our rights and bring hope in our country.
Vitaliy grew up in the Ukraine and graduated in 1993 from Kharkiv National University after specializing in nuclear physics. He worked both in this area and as a forensic investigator until the birth of his daughter. At the age of one she was diagnosed with spinal muscular atrophy and as a result of this, in 2004, Vitaliy founded the Foundation “Children with SМА”. The work carried out by the foundation has contributed to the publications in the press and on TV (regional and national). The Foundation carries out international activities in the field of SMA and understands the need for research. Vitaliy’s own research has centered on the rare heredity illness (SMA) and a clinical practice of treatment. His clinical focus is children and he has managed to involve several large institutes in Ukraine to take part in this work.
Ísak Sigurðsson is the President of the Icelandic organisation FSMA.
Kacper has a daughter affected by SMA. He is a founder and long-time president of Poland-based Fundacja SMA. Kacper’s earlier professional history includes humanitarian and human-rights work, including evaluating prison healthcare systems in South Asia as well as setting up and managing a parallel system of primary and secondary healthcare for refugees in the South Caucasus on behalf of a UN agency.
Mencía has 2 children with SMA Type 2. In September 2015, she was elected President of Fundación Atrofia Muscular Espinal (FundAME), which she represents on the SMA Europe Board. Her role within FundAME includes setting the strategy to reach the organisation’s goals and to take charge of relations with researchers, clinicians, the pharmaceutical industry and other organisations.
For over 18 years in the Neuromuscular field, Antigone has continuously been working on the creation, communication, and implementation of the Association’s vision, mission, and overall direction. She leads the development and implementation of the overall Association’s strategy. She advocates and communicates constantly with State agencies, Ministries in Greece and Pharmaceutical Companies. She played a key role on the foundation of 3 Multidisciplinary NMD Units in Greece, and she is responsible for their smooth operation. Furthermore, she is liable of the “Home of MDA Hellas”, directing all personnel and organising all fundraising events, social activities, raising awareness activities, scientific conferences.
Henrik is managing director of Muskelsvindfonden, which is a membership organisation of people with all kinds of neuromuscular diseases and their relatives. Muskelsvindfonden was founded in 1971 by Evald Krog, former president of EAMDA. In spite of being a representative for rare diseases, the organisation is very well known in Denmark because of it being financed by an annual touring music festival, Green Concert, and a very popular circus theater for children, Cirkus Summarum. Muskelsvindfonden has taken the initiative to build, organise and run a bedless rehabilitation centre for people with neuromuscular diseases including ALS. Furthermore, Muskelsvindfonden has taken the initiative to found the holiday, sports and conference center, Musholm, which is awarded by IOC (International Olympic Committee), IPC (International Paralympic committee) and IAUD (International Alliance of Universal Design) for its special accessibility for people with disabilities. Henrik is managing director of Musholm, too. He is a graduate in Strategy and Organisational Development from Copenhagen Business School.
Sofie is a mother of a girl with SMA type 2 born in 2012. Because of that, she got involved in the Swedish organisation NSMA , first as treasurer and later as chair. The main goal for NSMA is to increase knowledge about SMA in Sweden and to get the upcoming drugs for SMA reimbursed in Sweden. Sofie is working as a senior project manager at an international ERP company.
Ellen obtained her PhD in molecular biology from Leiden University in 2007 where she studied the application of microarray-based gene expression technology to neuromuscular disorders. Ellen has been working for the Prinses Beatrix Spierfonds for 8 years and is Head of policy and research. She is closely involved in the development of the Dutch SMA research agenda, together with patients and researchers.
Arabelle has one child with SMA type 2. She has, for a long time, been representing the SMA Belgium interest group, within the ABMM association which federates all patients with neuromuscular diseases and their parents.
She has been part of the steering committee of the newborn neonatal screening of SMA in Belgium since 2018 and collaborates with various stakeholders to optimise clinical trials.
On a professional level, Arabelle holds a master’s degree in communication and works as an upper secondary school teacher.
Daniel is a father of 3, his youngest Izabela Uyanga (born 2014) has SMA Type II. Before becoming a full time caregiver, Daniel worked in international business, mainly in the Chemistry field. Together with other parents, he co-founded Czech patient organisation SMÁci, z.s. and is engaged also in the name of patients in Slovakia (his homeland).
Olga has a daughter with SMA type 1, who was born in 2008. At that time, there was no information on prognosis and any attempts to find such information and support in Russia were unsuccessful. Olga thought that no one else should ever go through the pain, sufferance and insecurity of facing spinal muscular atrophy alone. She started by sharing her experience of dealing with SMA, first as a blogger, then a few years later, in 2014, she founded a non-profit organisation. Since 2014, she has been the President of SMA Family Foundation in Russia.
Lassi is currently acting President of SMA Finland and he has SMA2 himself. He’s also the father of a healthy girl.
Lassi has a Bachelor’s Degree in Business Information Technology. He also has experience of being a debute member of the council of the Union of the Employers of personal assistants in Finland and is a member of the board of the local association of neuromuscular disorders. Lassi has been working with The Finnish Neuromuscular Disorders Association for a couple of years.
SMA story: Diagnosed SMA type II at Hammersmith Hospital, 1982.
Position: Director, SMA Ireland
Career: 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.
Qualifications: Jonathan has a BA (Hons) and MA (Business and Economics) from Trinity College Dublin, and an MBA from Harvard Business School.
Marija Krstić is a mother of two children, her younger boy has SMA type 2. Because of that, she got involved in the SMA Serbia organisation in 2018, with the objective to help and improve the national organisation. She is a medical doctor, an ENT specialist, working on her PhD. With her medical knowledge she became a coordinator for medical issues and clinical trials within the national organisation. Her goal is to provide connections, support and collaboration with national and international institutions in order to give comprehensive support and networking with parents, families and health care providers to try to make therapies and trials accessible to all SMA patients. Her future efforts will be focused on European trends related to the development of new drugs for the treatment of SMA, implementation of Standards of Care and sharing awareness of SMA in Serbia.
Liz is the Supports Services Manager of SMA UK, an established charity that supports and empowers anyone affected by SMA.
SMA UK provides information and support, campaigns and advocates so that everyone in the SMA community can access the best care, services and treatments and benefit from continued research.
Denica Velkovska is a mother of two boys, the older with SMA type2 . She is a founder and an actual President of the association of persons with SMA in the Republic of North Macedonia “STOP SMA”. She acquired the advocacy experience in several other parent’s organisations, representing the group of patients with neuromuscular diseases.
Networking, share of knowledge, advocacy and parent’s support are in her focus. Still, the most important is the adequate treatment of SMA patients in the Republic of North Macedonia, and contributing in European tendency on medicine development and best possible treatment’s coverage of SMA patients.
Huub has two sons, one was diagnosed with SMA -3. Huub is an entrepreneur and owner of multiple IT companies in the Netherlands, focussing on Marketing, Sales and Service solutions. He works as a volunteer for the Vereniging Gehandicapte Wintersporters (Organisation of disabled wintersporters) where is the organiser of a yearly winter sports’ trip for 45/50 disabled children and their families.