With a background ranging from small non-profits to large university and museum settings, Lisa brings 30 years of non-profit administration experience to ASF. 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 ASF as a volunteer. Her son’s diagnosis led to her understanding of her own misdiagnosis stretching back more than four decades. As a patient, caregiver, and professional non-profit administrator, Lisa is uniquely qualified to help the Board of Directors lead Alport Syndrome Foundation’s efforts and is dedicated to the organization’s personally meaningful mission.
Director of Communications
& Patient Engagement
Kevin began volunteering for ASF in 2012 at age 26 after experiencing unexpected renal failure due to Alport syndrome. After two years on dialysis, he received a living donor transplant from a close friend. Kevin’s desire to help others in the rare disease community led to his position as ASF Social Media Specialist in 2014 and part-time Patient Outreach Coordinator in 2016. He has facilitated the Teen program at ASF Family Meetings, represented ASF at patient advocacy events and conferences, and co-moderates the ASF Facebook Support Group Page. In addition to his background in graphic design and experience in college administration, Kevin’s perspective and communication skills as a patient bring great value to ASF.