Anne Schoone
Network Leader
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Anne is working with children with deafblindness and CHARGE-syndrome since 2006. Since 2009, she works as a psychologist at Royal Kentalis in the Netherlands . As a member of a multidisciplinary diagnostic team, she is involed in dynamic assesment in children and adults with deafblindness and CHARGE syndrome. Assessing strenghts and opportunities for learning and development is the main focus in her daily work.
Anne is one of the founding members of the Dutch Kentalis CHARGE Team (since 2012), focused on building and sharing knowledge and expertise regarding CHARGE syndrome on both a national and international level. Anne is the co-chair of the DbI CHARGE Network of Deafblind International since 2023 and chair since 2025.
Andrea Wanka
Network leader Representative
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Andrea is Professor for Deafblindness and early education for children with complex needs especially in communication at the University of Education Heidelberg, Germany since 2018. Before she was an officer for Deafblindness at the Stiftung St. Franziskus Heiligenbronn, Germany.
Andrea has a PhD in education for children with special needs with a thesis about early communication of children with CHARGE Syndrome and their parents finished in 2011. Andrea has been the chair of the DbI CHARGE Network of Deafblind International since 2011.
Lourdes Quintana Baez
Social Media Contact Person
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Born and raised in Bayamon Puerto Rico, Lourdes has dedicated her life to serving and advocating for families with children with different abilities. As the Director of the Early Intervention Program in Central Florida for 16 years, she had the privilege of working with new parents, who were concerned about their child’s development. She joined the CHARGE Syndrome Foundation in 2022 and supports families from all over the world.
Understanding the power of family-to-family support, she leads the Family Liaison Program which consists of family volunteers that support other families in their journey with CHARGE Syndrome, navigating the systems of care and supporting each other. Lourdes supports ongoing efforts to promote education and awareness of this rare diagnosis while ensuring her families that they are not alone in their journey.
Heather Colson-Osborne
Content Officer
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Heather has worked in the field of deafblindness since 2007, having previously worked as an Outreach Advisor with the Anne Sullivan Centre in Dublin, Ireland. Heather has a MSc in Communication and Deafblindness from the University of Groningen in The Netherlands and has a special interest in tactile communication. She has also completed a course in the Tactile Working Memory Scale ran by the Nordic Welfare Center.
Heather currently works as a Multisensory Impairment Practitioner at Seashell Trust in the Uk as part of the Sensory Support Outreach team.
Veena Ramrakhiani
Content Officer
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Veena has an MQT in Multi-Sensory Impairment; MSc in Multi-Sensory Impairments and Complex Needs; Post Graduate Certificate in Education with specialism in Special Education; B.A. Psychology (Honours).
Veena has worked in the field of Special Education for 23 years and since 2006 has specialised in Deafblindness working with SENSE, Sensory Linq and Seashell Trust, UK. She has worked extensively with a wide range of deafblind learners mentoring and training within school and home settings. Currently she is an MSI advisory consultant in Deafblindness with the Outreach Sensory Support Team at Seashell Trust, UK.
Jerry Petroff
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