Member Details
Organization: Alport Syndrome Foundation
Title: Director of Programs and Services
About Me:
Afton DeLucca was diagnosed with X-linked Alport syndrome via biopsy at age 26, which was later confirmed by genetic testing. At least four generations of her family have been affected by Alport syndrome, including her son. She first attended an ASF Family Meeting in Philadelphia in 2014 and has been an engaged member of the community ever since. Afton served as ASF’s Patient Engagement Coordinator from 2021 to 2023, Associate Director in 2024, and currently serves as the Director of Programs and Services. She has a degree in Professional, Scientific, and Technical Writing and worked as an editor of scientific and medical publications for more than 13 years. Afton has also coauthored a patient perspective article in the Clinical Journal of the American Society of Nephrology.
Interests:
- events
- networking
- registries
- policy
- volunteers