Rian Edwards

RRian’s work through the EWE Foundation has made a huge impact on spreading awareness and education about what life is like for siblings of children with rare terminal diseases. Her brother Elijah is 5 years old and is living with Trisomy 18, a genetic chromosome abnormality that occurs in 1 in 5,000 births. Only 5-10% of children with Trisomy 18 live past their first year of life but with severe intellectual disabilities. Despite those odds, Elijah is 5 years old and started kindergarten this year at Rainbow Elementary.

Rian has become an advocate for her brother and has provided support for other young people who have sib-

Junior at Bob Jones High School

lings with this disease. In the fall of 2022, she spoke at a global conference for the first time in San Diego.

In addition to her work with the EWE Foundation, she is an active volunteer through Bob Jones High School in the Madison community. She has volunteered through the PTA and Student Government Association and serves as a Student Advisor to the Superintendent at Madison City Schools. She is also a member of the Best Buddies Program, which builds friendships between people with and without intellectual and developmental disabilities.

“The best part of volunteering for me is being able to participate and create spaces for people who would usually go unnoticed in our community,” said Rian. “As a minority and as a young woman, I truly value opportunities that promote inclusion and self-care.”

Through her volunteerism, Rian has worked on voter registration campaigns, and community food and warmth drives, and he has participated in fundraisers like the Kids Kingdom Renovation project.

“Volunteering allows members of the community to come together and make the most of our space; as a regular volunteer, specifically through our student government, I feel that my work helps students engage with staff members, but it also gives me the opportunity to experience new things and share them with others.”

Rian is excited about Madison’s future because she says our community thrives on education. She also sees diversity, equity, and inclusion as a priority for future growth in Madison.

“In the future, I would like to see more diverse representation in community leadership. I would also like to see more accommodations for people with special educational and health needs. As Madison grows, so should our special education programs as well as specialty pediatric services.”