Andrea Wanka
Network leader
Email: (for 2024, please contact Anne Schoone)
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 is the chair of DbI CHARGE Network of Deafblind International since 2011.
Anne Schoone
Network Leader Representative
(first person to contact in 2024)
Email:
Anne is working with children with deafblindness 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.
Allison Mail
Social Media Contact Person
Email:
Allison graduated from the University of Western Ontario, Canada with a BA in Developmental Psychology. Her introduction to the world of deafblindness was in 1986 when she began work as an Intervenor at the W. Ross Macdonald School, Brantford, Ontario in the Deafblind Unit, training under John McInnes and Jacquelyn Treffry. In 1989 she began working as a Resource consultant, traveling Ontario supporting students with deafblindness aged birth to 21 and their families. In 1999 she heard the call of the west coast and moved to Richmond to serve as the Executive Director of Deafblind Rubella Housing, which is now Deafblind Services Society of BC (DSS-BC). She took some time off to start her family, and in April of 2003 she started up the CDBA-BC Early Intervention Program.
In November 2011 she stepped down as Program Director and became the Deafblind Consultant for Vancouver Island. The Early Intervention program gives Allison the opportunity to use her many skills as an Intervenor, Resource Professional and Deafblind consultant in her work with families all across BC.
Lourdes Quintana Baez
Social Media Contact Person
Email:
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
Email:
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
Email:
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
Email: