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Education and Connection for Alport Syndrome Patients
Manage episode 287290563 series 2861129
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As we kick of our Alport Awareness Series & support National Kidney & Alport Syndrome Awareness Month, I am so excited to welcome to the show, Kevin Schnurr, Director of Communications, Alport Syndrome Foundation. Kevin began volunteering for Alport Syndrome Foundation in 2012 at age 26 after experiencing unexpected renal failure. 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. Listen in as Kevin shares his personal journey with Alport as well all about the Alport Syndrome Foundation and the amazing resources they offer.
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