Lisa Bonebrake

ASN Biography
Lisa Bonebrake is an Alport syndrome patient, caregiver, advocate, and Executive Director of Alport Syndrome Foundation, a patient support organization led by and dedicated to individuals living with this rare genetic kidney disease. In 2014, after her youngest son was diagnosed with Alport syndrome, Lisa began writing grant applications, attending patient advocacy events, and planning patient programs for the organization as a volunteer. Her son’s diagnosis led to the understanding of her own misdiagnosis stretching back more than four decades. With 30 years of experience in nonprofit administration, she joined the staff of Alport Syndrome Foundation in 2018. In 2021, her then 19-year-old son experienced ESRD and dialysis, and was given the gift of life through living kidney donation by his then 21-year-old brother. Lisa has published articles from the patient and caregiver perspective in the Journal of Glomerular Diseases and in the Clinical Journal of the American Society of Nephrology. She has advocated on Capitol Hill for legislation related to CKD and served on multi-stakeholder working groups for which she has presented findings to the Congressional Kidney Caucus and the Rare Disease Legislative Caucus. Lisa is motivated to help improve the lives of other patients and families living with kidney disease, both pre-and-post transplant, and to support much needed advancements in treatment options/cures for rare kidney conditions.