120 – What is Alport Syndrome? – Kevin Schnurr

In 2012, at the age of 26, Kevin Schnurr was unexpectedly diagnosed with Alport syndrome after being rushed to the hospital with high blood pressure. After two years on peritoneal dialysis, he received a living donor kidney transplant from a close friend in May 2014.

Kevin’s desire to help others in the rare disease community led to him volunteering at Alport Syndrome Foundation (ASF) in 2012. He later served in a position as ASF Social Media Specialist in 2014 and part-time Patient Outreach Coordinator in 2016. Kevin currently serves as the Director of Communications & Patient Engagement (since Oct. 2019). 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 his free time, Kevin loves playing guitar, attending concerts, and collecting/voraciously reading books.

Website: alportsyndrome.org
Socials: https://www.facebook.com/alportsyndromefoundation/

https://twitter.com/AlportSyndFndn

https://www.instagram.com/alportsyndromefndn/

https://www.youtube.com/user/TheASFoundation

Other links:
https://www.organdonor.gov/
https://www.donatelife.net/

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