Susanna van Tonder

Susanna van Tonder (born May 1988) is a Luxembourgish disability rights activist, patient advocate and blogger.

Susanna van Tonder
BornMay 1988
NationalityLuxembourgish
EducationCombined Social Sciences (The Open University)
Known forDisability Rights Activism & Patient Advocacy
TitleMember of the Higher Council for People with Disabilities (CSPH) in Luxembourg
Term2019-present
Board member ofMultiple Sclérose Lëtzebuerg

Biography
Susanna van Tonder at the Brain, Mind and Pain Meeting at the European Parliament in November 2018.

Van Tonder's first obvious multiple sclerosis relapse caused her to suffer a Grand Mal seizure in 2015. In 2016, exactly a year later, she was diagnosed with multiple sclerosis.[1] 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.[2] In 2017, she joined Shift.ms' volunteer team called 'The Energy'.[3] In 2018, she became a member of the board of the non-profit association Multiple Sclérose Lëtzebuerg [4] and a member of the EMSP's Young People's network.[2] As the youngest board member of Multiple Sclérose Lëtzebuerg, youth engagement and reducing isolation are her main focus areas.[5]

In early 2019 she joined the Higher Council for People with Disabilities (CSPH) in Luxembourg to complete Tilly Metz' term on behalf of Multiple Sclérose Lëtzebuerg and those affected by multiple sclerosis.[6] In July 2019 she was re-elected as a member for the period 2019-2023. [7]

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.[8]

Make A Difference Day - van Tonder's namebadge

Van Tonder maintains a blog describing her journey as a patient advocate.[9]

Susanna van Tonder presenting group findings at MSIF World Conference Young People's Workshop

Recognition

For her work in the multiple sclerosis field, van Tonder won the youth award De Jugendpräis Wooltz 2019 in the category 'outstanding achievement'.[10]

Further reading
  • Van Tonder's multiple sclerosis story was published in an interview format to raise awareness of multiple sclerosis and the challenges faced.[1]
  • Carte blanche on invisible disability - van Tonder peaking about acceptance and inclusion of those affected by hidden disabilities and the barriers faced.[11]
  • EFNA (European Federation of Neurological Associations) #brainlifegoals campaign: van Tonder's article on Multiple Sclerosis and Change.[12]
  • JUNGE MENSCHEN, MS UND LUXEMBURG - Eine Chance für einen relevanten gesellschaftlichen Wandel which can be translated to 'YOUNG PEOPLE, MS AND LUXEMBOURG - An opportunity for relevant social change'[5]



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References
  1. "Multiple Sklerose gëtt vu villen nach ëmmer net richteg verstanen, wat d'Liewe vun de Betraffene net méi liicht mécht". MOIEN.LU (in Luxembourgish). 2018-05-22. Retrieved 2019-12-11.
  2. "YPN Series: Susanna's story from Luxembourg". EMSP | European Multiple Sclerosis Platform. Retrieved 2019-12-11.
  3. "Meet Our Volunteers". Shift.ms. Retrieved 2019-12-11.
  4. "MS Kontakt (p.9)" (PDF). Multiple Sclérose Lëtzebuerg. March 2018. Retrieved 12 December 2019.
  5. van Tonder, Susanna (March 1, 2019). "JUNGE MENSCHEN, MS UND LUXEMBURG - Eine Chance für einen relevanten gesellschaftlichen Wandel (p.12/13)" (PDF). Msweb.lu. Retrieved 11 December 2019.
  6. "Arrêté ministériel du 11 janvier 2019, concernant la nomination de nouveaux membres du CSPH. - Legilux". legilux.public.lu. Retrieved 2019-12-23.
  7. "Arrêté ministériel du 26 juin 2019 portant nomination des membres du Conseil supérieur des personnes handicapées. - Legilux". legilux.public.lu. Retrieved 2019-12-11.
  8. "M.S. Brainy - Multiple Sclerosis Campaign". www.facebook.com. Retrieved 2019-12-11.
  9. van Tonder, Susanna (23 November 2019). "And suddenly you are a…patient advocate!". Rosport.life. Retrieved 23 December 2019.
  10. "Jugendpräis 2019". Jugendpräis Wooltz 2019 (in German). 2019-03-04. Retrieved 2019-12-11.
  11. "Verständnes muss fir all Behënnerung geschaf ginn!". Journal Lëtzebuerger (in German). Retrieved 2019-12-11.
  12. "Multiple Sclerosis and Change". EFNA. 2019-02-04. Retrieved 2019-12-23.
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