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.
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. Afton served as ASF’s Patient Engagement Coordinator from Oct. 2021 – Dec. 2023. 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.
Patient Engagement Coordinator
Maddison Martin, a 24-year-old Connecticut native, was diagnosed with Alport Syndrome via kidney biopsy, at 4-years-old. At the age of 20, she received the Gift of Life in the form of a living donor kidney transplant. She served as a member of ASF’s Emerging Leadership Council from March 2022 – December 2023. In 2022, she began her career as a registered nurse on a kidney and liver transplant floor. She is a former Paul Silver Enrichment Award recipient and, since 2021, has been instrumental in representing ASF in front of fellow patients, medical professionals, and pharmaceutical partners. Maddison’s desire to ensure the patient perspective is well-represented has made her a vital asset during the preparation of numerous ASF educational resources, including our Pediatric Insight Report, Things Transplant Patients Wish They Knew Before Surgery Document, and upcoming Transition to Adult Care document.
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, full-time Director of Communications & Patient Engagement in 2019, and full-time Associate Director in 2022. 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.
B. André Weinstock, PhD, MSAS
André has a BS in biochemistry, a PhD in analytical chemistry, and 20 years’ experience in pharmaceutical and medical device research and development with DuPont, Johnson & Johnson, Teleflex, and Merck KGaA. His mother, sister, and he all showed idiopathic (Greek for “don’t know why”) kidney and hearing problems growing up only to be diagnosed with Alport syndrome in 1982. This timing allowed him to partake in the studies that discovered the COL4A3, COL4A4, and COL4A5 genes that are now understood to be the root causes of Alport syndrome … and helped inspire his love for science.
After volunteering for six and half years on the ASF Board of Directors, André joined the ASF staff as Research Director in 2024. In this role he serves as the Principal Investigator of the ASF Alport Patient Registry, a co-investigator of the NEPTUNE Alport syndrome & collagenopathy ancillary study, member of the ClinGen Alport Variant Curation Expert Panel, Lead of the ASF Scientific Advisory Research Network, and other roles that bridge the patient and scientific worlds. He hopes to help progress Alport syndrome’s burgeoning therapeutic pipeline to an FDA-approved on-label therapy. André and his wife live in Somerville, MA and in walking distance to Harvard, MIT, and the Kendall Square biotech hub.