Susanna van Tonder

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

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

biography

Van Tonder's first apparent flare-up of multiple sclerosis resulted in a grand mal seizure in 2015 . In 2016, exactly one year later, she was diagnosed with multiple sclerosis. The experience of being diagnosed with an incurable disease in your early adult years led van Tonder to explore inclusion and understanding the needs of people with disabilities and those with chronic conditions.

After attending an event in 2017 organized by the European Multiple Sclerosis Platform (EMSP) and Shift.ms for young people affected by multiple sclerosis, she began to engage with the patient community. In 2017 she volunteered for the Shift.ms team called "The Energy". In 2018 she became a member of the board of directors of the non-profit association Multiple Sclérose Lëtzebuerg and a member of the network of young people of the EMSP. As the youngest board member of Multiple Sclérose Lëtzebuerg, her main focus is on engaging young people and reducing isolation.

At the beginning of 2019 she joined the High Council for People with Disabilities (CSPH) in Luxembourg to conclude Tilly Metz's term for Multiple Sclérose Lëtzebuerg and those affected by multiple sclerosis. In July 2019, she was re-elected for the 2019-2023 term.

In 2019, van Tonder created the MS Brainy campaign to "raise awareness about multiple sclerosis and the diversity of those with MS. The campaign features the stories and faces of the people living with MS and what it can mean with." Live MS. " It's under the hashtag #MoreThanBrain #MultipleSclerosis.

Van Tonder maintains a blog detailing your development as a patient advocate.

Susanna van Tonder presents group results at the MSIF World Conference Young People's Workshop

recognition

For her work in the field of multiple sclerosis, van Tonder won the De Jugendpräis Wooltz 2019 youth award in the 'Outstanding Achievement' category.

literature

  • Van Tonder's statement about multiple sclerosis was published in an interview format to raise awareness about multiple sclerosis and the challenges it poses.
  • Carte Blanche on the subject of invisible disabilities - van Tonder on acceptance and inclusion of those affected by hidden disabilities and the obstacles associated with them.
  • EFNA (European Federation of Neurological Associations) # Brainlifegoals campaign: van Tonder's article on multiple sclerosis and change
  • YOUNG PEOPLE, MS AND LUXEMBOURG - An opportunity for relevant social change
Make a difference day - Van Tonders name badge

Individual evidence

  1. ↑ a b multiple sclerosis gëtt vu villen after ëmmer net richteg understood, wat d'Liewe vun de concerned net méi liicht mécht. In: MOIEN.LU. May 22, 2018, accessed on January 7, 2020 (Luxembourgish).
  2. ↑ a b YPN Series: Susanna's story from Luxembourg. In: EMSP | European Multiple Sclerosis Platform. Retrieved January 7, 2020 (American English).
  3. ↑ Meet Our Volunteers. Retrieved January 7, 2020 (UK English).
  4. ↑ MS contact (page 9). Multiple Sclérose Lëtzebuerg, March 2018, accessed on January 7, 2020 .
  5. ↑ a b Susanna van Tonder: "YOUNG PEOPLE, MS AND LUXEMBOURG - An opportunity for relevant social change (p.12 / 13)". In: www.msweb.lu. March 1, 2019, accessed January 7, 2020 .
  6. ↑ Arrêté ministériel du 11 janvier 2019, concernant la nomination de nouveaux membres du CSPH. - Legilux. Retrieved January 7, 2020 .
  7. ↑ Arrêté ministériel du 26 juin 2019 portant nomination des membres du Conseil supérieur des personnes handicapées. - Legilux. Retrieved January 7, 2020 .
  8. ↑ MS Brainy - Multiple Sclerosis Campaign. Retrieved January 7, 2020 .
  9. ↑ Her Own Multiple Sclerosis Diagnosis, Since Then She Has Won a Youth Reward for Her Advocacy Work, has been present at several events at the European Parliament, featured in newspaper articles In Luxembourg, she is a part of the board of Multiple Sclérose Lëtzebuerg In addition: And suddenly you are a… patient advocate! In: https://rosportlife.com . November 23, 2019, accessed January 7, 2020 (American English).
  10. ↑ Jugendpräis 2019. In: Jugendpräis Wooltz 2019. March 4, 2019, accessed on January 7, 2020 (German).
  11. ↑ Understanding must be created for all malnutrition! Accessed January 7, 2020 (German).
  12. ↑ Multiple Sclerosis and Change. In: EFNA. February 4, 2019, accessed January 7, 2020 (American English).
personal data
SURNAME Van Tonder, Susanna
BRIEF DESCRIPTION Luxembourg disability rights activist, patient advocate and blogger
DATE OF BIRTH May 1988