Vanessa dos Santos is the mother of 3 boys of whom the youngest has both Down syndrome and cerebral palsy.
She has been involved with Down Syndrome South Africa (DSSA) since his birth in 1995. Vanessa was appointed as the National Chairperson of DSSA in 2003 and later appointed as the National Director of the organisation until 2014 and now volunteers for the organisation. Vanessa has also been a Board member of Down Syndrome International (DSi) since 2003 and recently was appointed as an officer of Inclusion International.
Much of the work she has been involved in has been focusing on poverty and disability and she has been instrumental in setting up “Outreach Support Groups” and “Self Advocacy Groups” throughout South Africa and is the founder member of the Self Advocacy Movement of South Africa (SAMSA) and Inclusion South Africa (ISA). She is also very passionate on the Human Rights of individuals with Down syndrome and intellectual disabilities. Other areas of interest are policy development that encourages the improvement of lives of disabled people, early intervention, inclusive education, self advocacy and supported employment. She completed a Masters in Philosophy in Disability Studies at the University of Cape Town in 2010.
In 2012 Vanessa became President of Down Syndrome International and will serve in this position until August 2015.