A local family is working to raise awareness about rare diseases as a way to honor the memory of their daughter, Ava Grace, and to provide a support system for families who have a child with a rare disease.

Joe and Tonya Chandler created the Ava Grace Foundation in memory of their daughter Ava Grace Chandler, who was born on Sept. 28, 2021. Ava was born with Kagami-Ogata Syndrome — a syndrome they had never heard about bu tis now “words which have since been seared into our hearts and minds.”

There are only 80-something recorded cases of the syndrome. They sought information, prayed for good days, advocated for treatment, worked with medical teams, and cherished the 10 months they had with Ava Grace.

Thursday, the Chandlers and their two other children, Jack and Cece, joined Athens Mayor Ronnie Marks at City Hall to declare Feb. 29, 2024, as Rare Disease Day in Athens, and to encourage the community to learn about ways to support and advocate for those impacted by rare diseases.

To learn more about the Ava Grace Foundation, visit www.avagracefoundation.org.