News

The purpose of SMA Europe is to provide a framework to stimulate collaboration and accelerate translational research pathways in SMA and promote patient care.

  1. Our youngest advocate gives a TED Talk on equality and access

    Our youngest advocate gives a TED Talk on equality and accessOur youngest advocate, Jane Velkovski, gave his first TED talk at the Global Forum for Children and Youth organised by UNICEF.

    This was a three-day event comprising 40 sessions, with 100 speakers, including high-level representatives from the United Nations, heads of government, business and civil society, authors, artists, influencers and most importantly, children and young people.

    Jane is 13 and the son of Denica, our delegate from North Macedonia. He has been part of UNICEF disability campaigns in North Macedonia and some of you may remember his impressive speech at the United Nations’ Headquarters in New York two years ago.  He was also part of a UEFA campaign to raise awareness of equality and access issues. Jane is passionate about football and plays whenever he gets the chance. He is often the first on the field. As he puts it: “I have a muscular disease, which means I can’t walk. But I don’t let anyone joke about the issues I have with walking.

    Jane is a vehement advocate for every child’s right to freedom of movement. He found his freedom and independence through his power wheelchair, which was donated to him. Jane recognises that this should not be a question of luck, or generosity. He wants policies to make sure that wheelchairs, other tools, support and care are available to all that need them.

    I want to tell the whole world that everyone is equal and that people with disabilities can do the same things everyone else can. And even if they can’t, that doesn’t mean they can’t enjoy their lives

    Access to treatment and care is something SMA Europe is addressing, as it is fragmented in Europe. Through our new project, OdySMA, we seek to map and visually display the landscape of treatment and care in our different European countries, to understand and demonstrate the differences in access across countries and patient subgroups, to identify access priorities, gain the needed access skills, build successful advocacy strategies and inform evidence-generation priorities. You can find out more about our work here.

    Jane’s talk can be accessed here (13 minutes 07 seconds in):