Leaders in Advocacy
The Story of the Black Down Syndrome Association
Kelli Caughman
Caughman and Lotterberry
Building a Dedicated Community
Caughman and Lotterberry first met through disability advocacy and quickly recognized a troubling gap: Black families were largely absent from mainstream support conversations. As they connected with other parents in their network, it became clear that the community needed more than just representation—it needed a dedicated space created by and for Black families.
On August 30, 2022, two years after their initial meeting, Caughman and Lotterberry officially founded the Black Down Syndrome Association (BDSA.) Their goal was straightforward: ensure Black families raising loved ones with Down syndrome are fully seen, supported, and heard.
Impact and Programs
Since its inception, BDSA has expanded rapidly, now serving more than 2,000 families internationally and hosting over 1,400 members in its private online support group. The organization offers tailored initiatives to assist new parents, adolescents, caregivers, and local community leaders.
The organization’s flagship initiative is the annual BDSA Family Reunion Conference. This three-day event brings families together from across the country to celebrate their loved ones, participate in Down syndrome research, learn from leading medical and educational experts, and build lasting connections with peers who share similar lived experiences.
They will be hosting their second annual conference October 29 through November 1, 2026 in Noblesville, Indiana.
To learn more about Black Down Syndrome Association, please visit blackdownsyndrome.org.
About the Author
Kelli Caughman serves as the co-founder and president of the Black Down Syndrome Association (BDSA). A dedicated leader in the Down syndrome community, Caughman has advocated for families for over a decade. Driven by her lived experience as a mother of three children—including one with Down syndrome—she leads the organization with a deep passion for improving family access to vital resources and medical information.
Crystal Lotterberry is the co-founder and Vice President of BDSA. A nationally recognized public servant and advocate, Lotterberry was inspired by her son, Griffin, to transform her family’s personal journey into a broader mission. Her work focuses on providing equitable access to education, community, and support for historically underrepresented Black individuals with Down syndrome and their families.