Toni Burns

Board Member

Toni Burns has over 20 years as an educator and advocate for individuals with neuro-differences, coupled with early intervention case management supporting identified children and their families.

Toni was born and raised in Connecticut and has lived in various places including Louisiana, Tennessee, Minnesota, Rhode Island and Colorado. She completed her undergrad work at Providence College, then worked in banking and insurance until three children came along. After her three children were in school, she pursued certifications in early childhood development. She has worked closely with typically developing and special needs children in public schools, Head Start and profoundly gifted/twice exceptional children in private school settings. She has served on numerous advisory and educational boards for special education and community-based programs. She is a freelance photographer and owner of Grace b Photography and is a freelance writer. In 1992 her middle child Hally was born with special needs and was identified as Developmentally Delayed. Their journey of therapies and supports, medical conditions, hospital stays, IEP’s and special education began, but all the while they never had a true diagnosis for Hally until early 2021. In 2019 Toni requested another genetic test for Hally based on a hunch her eldest had from seeing a photograph of a child with Koolen-de Vries in a museum in Houston that strongly resembled her sister. Two years later the testing was completed, and the hunch confirmed. Twenty-eight years after Hally was born they had a diagnosis, Koolen-de Vries Syndrome. Toni is inspired to support other families on their own journey with Koolen-de Vries having lived with a child with Koolen-de Vries for over 28 years. She is hopeful for the future and excited to learn more about this syndrome alongside others.