An Update from our 2009 George Brett Award for Commitment Award Recipient: Terry Betzelberger

In the late 1970s, Terry Betzelberger was about to start his freshman year at the University of Kansas when his father, Charlie, received the ALS diagnosis. Terry researched the disease at the KU library and found out the life expectancy for ALS was only 2-5 years. Charlie passed away a few years later, while Terry was still in college.

In the 1980s, Terry's mother worked with several others to develop a local organization, specifically for ALS patients and families. A local ALS society, now known as The ALS Association Mid-America Chapter, was established in 1985. Terry served on The Chapter’s board for over 20 years and also served on the National Board of Trustees for The ALS Association for several years. In addition, he, along with his family, continue to sponsor events, fundraise and raise awareness of ALS. Terry said, “I hope to see the end of ALS in my lifetime.”

Over the years, Terry has seen a lot of progress for the ALS community.  “There is a significant difference between the quality of life now, vs when my Dad had ALS.” Even the time it takes to diagnose ALS has improved. He said, “The process of elimination at that time was very frustrating.”

Years have gone since his Dad passed away, yet Terry remains committed, he said “Being around the people that have experienced this disease, caregivers, the staff, the whole support system- they all are amazing.” He said, “So why would you want to get away from that?”