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. Nobel Peace Prize winner donates award to children living with SMA

    Nobel Peace Prize winner donates award to children living with SMARussian journalist Dmitry Andreyevich Muratov and Philippines journalist Maria Ressa were awarded the 2021 Nobel Peace Prize for their work to defend freedom of expression in their home countries. The two journalists were given the award “for their efforts to safeguard freedom of expression, which is a precondition for democracy and lasting peace.”

    Dmitry Muratov is the co-founder and editor-in-chief of the independent newspaper Novaya Gazeta. He will donate part of his award for the treatment of children living with SMA and to other causes.  He was inspired to back this cause after a reporter on his team alerted him to the extreme financial burden families face in seeking treatment for their children who are living with SMA.

    Access to treatments and care for people living with SMA across Europe is fragmented. A survey we ran (EUPESMA6) in 2019 showed unequal treatment access across different age groups, SMA types and mobility levels. SMA Europe strives to better understand this landscape, the access hurdles and to identify advocacy and policy shaping initiatives to overcome this issue. And where access is granted, we want to ensure continuity. To do that, we are setting-up a comparative, systematic access data collection, including its translation into actionable steps, in order to address access challenges and ensure that no subgroup is left untreated. This initiative, or access atlas, is called OdySMA, find out more about it here!

    The Nobel Peace Prize laureates willcollect their awards in Oslo on 10th December, the anniversary of Alfred Nobel’s death.

    About Dmitry Andreyevich Muratov

    Nobel Peace Prize winner donates award to children living with SMA

    Credit: Lymantria through Wikimedia Commons, licence: Creative Commons Attribution-Share Alike 3.0 Unported

    Dmitry Muratov was born on 30th October 1961 in Kuybyshev, now Samara, Russia. After studying at Kuybyshev State University (now Samara State University), Muratov served in the Soviet army for several years. In the mid-1980s he began working as a newspaper reporter at Volzhsky Komsomolets (“Volzhsky Young Communist Leaguer”), and he later moved to Komsomolskaya Pravda (“Young Communist League Truth”). In 1991 the Soviet Union collapsed, and restrictions on news media were subsequently lifted. Two years later Muratov and other journalists from Komsomolskaya Pravda founded Novaya Gazeta. The pro-democratic newspaper was reportedly assisted by former Soviet president Mikhail Gorbachev, who gave it a portion of his award money from the 1990 Nobel Peace Prize. Muratov began as deputy editor in chief, and he later served as a correspondent during the 1994–95 conflict in Chechnya. In 1995 Muratov became the editor in chief. Although he stepped down in 2017, he returned to the post two years later.

    Sources

    1. Medusa Project SIA – ‘This prize belongs to my lost colleagues’ Novaya Gazeta editor-in-chief Dmitry Muratov on winning this year’s Nobel Peace Prize
    2. My SMA Team – Nobel Peace Prize Winner Will Donate Money to SMA Treatment for Children
    3. The Nobel Prize Organisation
    4. Britannica – Dmitry Muratov, Russian journalist
    5. United Nations – Nobel laureate Dmitry Muratov won’t keep ‘a single cent’ of his prize money
    6. Gusset N, Stalens C, Stumpe E, Klouvi L, Mejat A, Ouillade MC, de Lemus M. Understanding European patient expectations towards current therapeutic development in spinal muscular atrophy. Neuromuscul Disord. 2021 May; 31(5): 419-430.