The Jasperson Legacy Fund
The Jasperson family’s fund is dedicated to helping patients, families, and carepartners through their difficult journey; to educating and creating awareness of PSP and related neurodegenerative conditions; and to funding promising research studies aimed at finding a cure. It honors Stephen N. Jasperson and his father, Newell Jasperson. The Jaspersons have generously funded the Stephen N. Jasperson/CurePSP Study on mechanisms of protein clearance in the brain, conducted at Columbia University. A second Stephen N. Jasperson/CurePSP Study, also conducted at Columbia University, will evaluate the particular difficulties with swallowing, coughing and communication in people with PSP, in order to develop specific therapy techniques and establish new core guidelines.
Here is their story told by Steve’s wife, Ann Jasperson.
In August of 2015, Steve and I celebrated our 50th wedding anniversary. Our two daughters, Amy and Laurie, and their husbands were involved in planning a special family celebration for us. A highlight was a video that told the story of our wonderful life together. We laughed and reminisced over photos: Steve in hip boots working on the cranberry marsh in central Wisconsin where he grew up; me riding my bike in the small town in Wisconsin where I was raised; Steve and me playing frisbee at a church outing at the University of Wisconsin, Madison, where we met; Steve in his gown at graduation from UW, then me in my gown when I graduated two years later. There were lots of pictures of our wedding from that summer.
Early in our marriage, we lived in Princeton, New Jersey, where Steve went to graduate school, earning his MS and PhD degrees in physics. I taught physical education classes and coached in a nearby junior high school. There were pictures of those years too. We saw images of six musical tours in Eastern and Western Europe and Mexico, reflecting Steve’s passion for music. He sang low bass in the Worcester Chorus for 38 years, and was an accomplished piano player.
Steve spent his professional career at Worcester (Massachusetts) Polytechnic Institute as a physics professor teaching freshmen through graduate students, serving as physics department chair and as Secretary of the Faculty. His research in solid state physics took our young family to the Mojave Desert for several summers and led us to discover hiking and backpacking in the Sierra Nevada Mountains.
As a person who got excited about exploration and sought out new challenges, Steve climbed Mt. Whitney four times by three different routes. He made his last Mt. Whitney climb with family and friends to mark his 60th birthday.
We looked forward to continuing this level of activity and travel when he retired in 2008. However, in 2009 we noticed that something was different. He fell down occasionally, walked slower, and his arms didn’t swing naturally.
His athletic balance and footwork were off when he practiced dancing with our daughter for her wedding. His depth perception seemed to fail him. Within the next two years the falls and resultant trips to the ER increased, where they found cracked ribs, a broken collarbone and cuts on his face, sometimes requiring stitches.
Later he was diagnosed with Parkinson’s-like symptoms, and eventually, progressive supranuclear palsy (PSP).
We had never heard of this disease before. As I did research online and learned more, I had trouble sleeping and had to remind myself each morning that the nightmares I was having were true. Our life had changed forever.
Our retirement years took us on a path not chosen but determined by the devastating symptoms of PSP. Steve’s gradual loss of the ability to walk, speak, and eat took away his ability to be the involved husband, father, grandfather, and son he loved being. His active lifestyle morphed gradually into a very limited, restricted life.
His courage and determination to remain relevant in our lives was both heart-wrenching and inspiring to loved ones. His hearing, cognition, understanding, and memory are still strong. We still see his sense of humor and to us he is the same husband and father whom we love. He enjoys having articles, especially about the universe, read to him. At the end of each story, he wants to know: 1) Did you like the story? 2) Did you learn something new? Always the teacher!
As a scientist, Steve wants to do all he can to find a cure for PSP so that, one day, others will not have to suffer his fate. His father, Newell, has made a generous donation to fund a promising research study at Columbia University under Steve’s name. We have set up this web page for others who wish to contribute to this effort to foster research, education and awareness, and support for families and carepartners of those suffering from PSP and related diseases.
Steve passed away on October 5, 2016, surrounded by his loving family.
Newell passed away on December 14, 2016, surrounded by his loving family.
All donations made on this page will go to the Jasperson Legacy Fund. For donations by check, please make check out to Cure PSP, Inc. (NOT the Jasperson Legacy Fund). Indicate on the check, “In memory of Steve Jasperson” or “In memory of Newell Jasperson.” Mail check to Diane Seegull at CurePSP, 30 East Padonia Rd., #201, Timonium, MD 21093. Thank you for your generosity and for your recognition of the exceptional lives and legacies of Steve and Newell.