Susanna van Tonder explained

Susanna van Tonder
Nationality:	Luxembourger
Education:	Combined Social Sciences (The Open University)
Known For:	Disability Rights Activism & Patient Advocacy
Term:	2019-present
Boards:	Multiple Sclérose Lëtzebuerg

Susanna van Tonder is a Luxembourg disability rights activist, patient advocate and blogger.

Van Tonder's first obvious symptoms of multiple sclerosis caused her to have 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. 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 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.^[7] Van Tonder maintains a blog describing her journey as a patient advocate.^[8]

Recognition

For her work in the multiple sclerosis field, van Tonder won the youth award De Jugendpräis Wooltz 2019 in the category 'particular achievement'.^[9]

Further reading

• Web site: Verständnes muss fir all Behënnerung geschaf ginn!. Journal Lëtzebuerger. de-DE. 2019-12-11.
• Web site: Multiple Sclerosis and Change. 2019-02-04. EFNA. 2019-12-23.
• Web site: YOUR VOICE: Covid-19 – A catalyst for social change?. 2020-10-10. today.rtl.lu. en.

Notes and References

1. Web site: Multiple Sklerose gëtt vu villen nach ëmmer net richteg verstanen, wat d'Liewe vun de Betraffene net méi liicht mécht. 2018-05-22. MOIEN.LU. lb. 2019-12-11.
2. Web site: YPN Series: Susanna's story from Luxembourg. EMSP European Multiple Sclerosis Platform. 2 October 2018 . en-US. 2019-12-11.
3. Web site: Meet Our Volunteers. Shift.ms. en-GB. 2019-12-11.
4. Web site: MS Kontakt (p.9). March 2018. Multiple Sclérose Lëtzebuerg. 12 December 2019.
5. Web site: JUNGE MENSCHEN, MS UND LUXEMBURG - Eine Chance für einen relevanten gesellschaftlichen Wandel (p.12/13). van Tonder. Susanna. March 1, 2019. Msweb.lu. 11 December 2019.
6. Web site: Arrêté ministériel du 11 janvier 2019, concernant la nomination de nouveaux membres du CSPH. - Legilux. legilux.public.lu. 2019-12-23.
7. Web site: M.S. Brainy - Multiple Sclerosis Campaign. www.facebook.com. en. 2019-12-11.
8. Web site: And suddenly you are a...patient advocate!. van Tonder. Susanna. 23 November 2019. Rosport.life. 23 December 2019.
9. Web site: Jugendpräis 2019. 2019-03-04. Jugendpräis Wooltz 2019. de-DE. 2019-12-11.