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Susanna van Tonder is a Luxembourg disability rights activist, patient advocate and blogger.
Van Tonder's first obvious symptoms of 
Susanna van Tonder is a Luxembourg disability rights activist, patient advocate and blogger.
Van Tonder's first obvious symptoms of multiple sclerosis
Multiple (cerebral) sclerosis (MS), also known as encephalomyelitis disseminata or disseminated sclerosis, is the most common demyelinating disease, in which the insulating covers of nerve cells in the brain and spinal cord are damaged. This d ...
caused her to have a Grand Mal seizure in 2015. In 2016, exactly a year later, she was diagnosed with multiple sclerosis
Multiple (cerebral) sclerosis (MS), also known as encephalomyelitis disseminata or disseminated sclerosis, is the most common demyelinating disease, in which the insulating covers of nerve cells in the brain and spinal cord are damaged. This d ...
. This experience of being diagnosed with an incurable disease in her early adult years led van Tonder to work on inclusion and wider understanding of the needs for people with disabilities and patients affected by chronic conditions.
After attending an event in 2017 organised by the European Multiple Sclerosis Platform (EMSP) and Shift.ms for Young People affected by Multiple Sclerosis she started being involved in the patient community. In 2017, she joined Shift.ms' volunteer team called 'The Energy'. In 2018, she became a member of the board of the non-profit association Multiple Sclérose Lëtzebuerg and a member of the EMSP's Young People's network. As the youngest board member of Multiple Sclérose Lëtzebuerg, youth engagement and reducing isolation are her main focus areas.
In early 2019 she joined the Higher Council for People with Disabilities (CSPH) in Luxembourg to complete Tilly Metz
Tilly Metz (born 26 May 1967) is a Luxemburgish politician and member of the Green Party ( déi Gréng). After teaching humanities and social sciences, she was appointed as deputy director of the Lycée Technique pour Professions Educatives et S ...
term on behalf of Multiple Sclérose Lëtzebuerg and those affected by multiple sclerosis.
In 2019, van Tonder created the M.S Brainy Campaign to "raise awareness of multiple sclerosis, and the diversity of those affected by MS. The campaign features the stories, and faces of those living with MS and what it may mean to live with MS. It operates under the hashtag #MoreThanBrain #MultipleSclerosis. Van Tonder maintains a blog describing her journey as a patient advocate.
Recognition
For her work in the multiple sclerosis field, van Tonder won the youth award De Jugendpräis Wooltz 2019 in the category 'particular achievement'.Further reading
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{{DEFAULTSORT:van Tonder, Susanna 1988 births Living people Luxembourgian disability rights activists Luxembourgian people with disabilities People with multiple sclerosis 21st-century Luxembourgian people 21st-century Luxembourgian women Activists with disabilities