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. Read Lisa’s letter to the Alport community.
Patient Engagement Coordinator
In 2009, Afton was diagnosed with Alport Syndrome at age 26 after years of misdiagnosis. She attended the ASF Family Meeting in Philadelphia in 2014 and has been an engaged member of our community ever since. She has a degree in Professional Writing and has worked as an editor of scientific and medical publications for more than 15 years. Afton brings her experience in medical publishing and passion for kidney disease awareness to this role. In addition to being a patient herself, she is also the mother of a young son with Alport Syndrome. She hopes to offer the same support and encouragement that she has received through ASF to help others along their journey. Click here to learn more about Afton.
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, part-time Patient Outreach Coordinator in 2016, and full-time Director of Communications & Patient Engagement in 2019. He has facilitated the Teen program at ASF Alport Connect Meetings, represented ASF at various patient advocacy events and conferences, and co-moderates the ASF Facebook Support Group Page. In addition to his background in journalism and graphic design, and experience in college administration, Kevin’s perspective and communication skills as a patient bring great value to ASF. Click here to read Kevin’s patient journey.