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June Monthly Update

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New CHARGE Syndrome Publication

A new publication, Re-CHARGE: Voices About Living With CHARGE Syndrome, is available from the Nordic Welfare Center. Its purpose is to raise awareness about the diversity and complexity of living with CHARGE syndrome. The publication features the voices of persons with CHARGE syndrome as well as their relatives and professionals who work with them.

Deafblind International Conference Proceedings

The full text of the proceedings from the 18th Deafblind International World Conference, held July 22 to 28, 2023, in Ottawa, Canada, is now available online. The conference theme was “Lived Experiences, Evidence-Based Practices and Research.”

OSEP Conference Registration

The 2024 OSEP Conference will be held August 6 to 8, 2024, at the Crystal Gateway Marriott Hotel in Arlington, Virginia. Registration for the 2024 OSEP Conference is open until Monday, July 8.

Now Available in Spanish: Key Topics for Families

The "Key Topics for Families" pages are now available in Spanish: Temas Clave Para Las Familias. This extensive resource includes information on strategies and supports that families can use to help them navigate their child's services and their family's everyday life. Resources are organized by topic, including early intervention, educational services, learning at home, transition, caring for the family, and more. Toggle between English and Spanish versions in the upper right corner of the screen.

Grief Support for Families of Children with Deafblindness

Registration is now open for Sensing Connections, two peer-to-peer support programs that offer family members an opportunity to process their grief and learn coping strategies that have helped others. The first session meets weekly on Wednesday evenings from September 18 to February 26. Enrollment is free.

New Journal Articles

If you need assistance accessing any of these articles, contact

Armstrong, K. (2024). Hand under hand: An educational milieu. VIDBE-Q, 69(2), 58-68.

Eilertsen, L. (2024). Gaze and tactile sense: Children with Down syndrome and combined sensory disabilities in social interaction with teachersJournal of Interactional Research in Communication Disorders, 15(2).

Ivy, S., Hanline, M.F., & Robbins, A. Teaming to design tangible symbol communication systems for children with multiple disabilitiesYoung Exceptional Children (2024): 10962506241248758.

Kanwar, K., et al. (2024). Ocular manifestations of CHARGE syndrome in a pediatric cohort with genotype/phenotype analysisAmerican Journal of Medical Genetics Part A, e63618.

Kickbush, C. (2024). Early identification: Using a functional vision screening tool. VIDBE-Q, 69(2), 48-55.

Upcoming Events

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Did you miss last month's update? Click on the link below to read last month's activities and events.