Sonoma County mom of daughter with rare genetic disease works to create an inclusive community

While caring for her daughter, who has Cornelia de Lange Syndrome (CdLS), a rare genetic spectrum disorder that presents complex medical, physical, and developmental challenges, Emily Peterson is championing a more welcoming and inclusive spirit within her community.

Peterson is hoping to rally enough support for the annual Inclusion Festival, which will return in 2027. To build momentum for the 2027 festival, Inclusive Compass is hosting a volunteer appreciation and recruitment event on May 9 at the Petaluma Community Center. This event will celebrate volunteers and invite new community members to join in the effort.

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For Peterson, her advocacy in the rare disease community began long before becoming a mother. She and Emily Parker, founder of Inclusive Compass, were sorority sisters at Sonoma State University’s Alpha Xi Delta chapter, where their philanthropy focused on supporting children before moving on to Autism Speaks. Years later, their paths crossed again when Peterson started teaching in the same district, where Parker taught at the special education preschool. Peterson’s first involvement with the Inclusion Festival came in 2018, before her daughter was born.

“Accessibility became even more personal,” Peterson said. “Inclusion Festival continues to grow and has great potential to be one extraordinary event.”

The event on May 9 will also celebrate International CdLS Awareness Day, which is observed on the same date.