S2, E5. Alport Syndrome: When your life changes overnight, finding hope, taking action and giving support
Kevin began volunteering for Alport Syndrome Foundation (ASF) in 2012 at age 26 after experiencing unexpected renal failure due to Alport syndrome. He was previously misdiagnosed with benign familial hematuria.
After two years on dialysis, he received a living donor transplant from a close friend in May 2014.
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. Kevin has served as ASF’s Associate Director since January 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.
More about Maryna Kolochavina:
As a patient advocate, I meet many people affected by rare and orphan conditions. Some are at the beginning of their patient journey. Others are newly diagnosed children, or parents of a rare disease patient who would like a second child but fear that the new baby might also be impacted. Still others are patients who are on a long odyssey toward a diagnosis, or who have no available treatment options. All have one thing in common: a laser focus on their particular rare disease. However, each person is much more than his or her condition.
Realising this fact was the moment of my epiphany – and I started to paint. My art shows people affected by rare and orphan diseases in everyday situations – living life to the fullest with their families. My paintings show the joys of family life – an adult playing with a child, brothers and sisters laughing together, or the miracle of being pregnant. My goal for these paintings is to empower patients and their families to share their everyday experiences with others. This does not deny the reality of the disease but rather emphasizes the full humanity of the person with rare condition – and the fact that, as with all of us, the art actually exists within them.”
Illustration by, Maryna Kolochavina, PharmD, PhD, PMP. Director of the Five Voices Consortium, Ltd.