After receiving a clinical diagnosis of Hereditary Spastic Paraplegia (HSP) in 2020, Mark Konietzko has been a staunch advocate for rare diseases in his home state of Minnesota and nationally. Mark has served as a member of the Spastic Paraplegia Foundation (SPF) Advocacy Committee since 2023, and since 2024 has supported the Minnesota Rare Disease Advisory Council (RDAC), which included planning for Rare Disease Advocacy Days at the MN Capitol in 2024 and 2025. During Advocacy Days, Mark was able to meet with MN Sen. Warren Limmer and MN Rep. Kristin Robbins to raise awareness of rare diseases and request their support.
In 2025, Mark participated in Rare Across America, where he met with the legislative staffs of MN Sen. Amy Klobuchar, MN Sen. Tina Smith, and MN Rep. Kelly Morrison to request their support for initiatives important to the rare disease community.
