In Loving Memory

Our family dedicates this page in tribute to Kristine, a bright light and beautiful personality, whose vibrant spirit continues to shine in the hearts of all who knew her. Though her life was tragically cut short by the rapid progression of Creutzfeldt-Jakob Disease (CJD), her memory remains as a life lived with love, kindness, creativity, and a zest for adventure.

Creutzfeldt-Jakob Disease (CJD), or Prion Disease, is a rare and always fatal neurodegenerative disorder. This devastating condition is characterized by a rapid deterioration of proteins in the brain called prions. When a normal protein misfolds in shape, it can trigger a chain reaction, causing other normal proteins to also misfold, resulting in an accumulation of abnormal misfolded proteins. This accumulation leads to a variety of symptoms which are often misdiagnosed, but include problems with vision, coordination and balance. As the illness progresses, there is a decline in mental and physical abilities, and death typically occurs within one year. Because many cases are misdiagnosed and research is sorely underfunded, the toll on the patient, as well as the family, is profound.

Kristine’s Story

Born April 3, 1966, Kristine’s beautiful personality shone through in all she did, from her kindness to others, her love toward animals, her creativity in cooking and home decorating, to her free spirit. Beyond her genuine compassion for people, she often went out of her way to care for any person or animal in need. This nurturing spirit also extended to her remarkable talent and love of gardening - she truly had a green thumb. Her creativity was evident in cooking and in transforming simple objects into beautiful artistic pieces. Having worked for a cruise line, Kristine developed a passion for cruising and adventure, and one of her mother’s most cherished memories is a mother-daughter cruise in May 2025, shortly before Kristine’s death on August 4, 2025.

In retrospect, the family believes that the onset of her illness began before November 2024. Initially, Kristine’s symptoms of stress, anxiety, balance and blurred vision were subtle and diagnosed as PTSD and depression, leading to a prescription for antidepressants and psychotherapy. By June 16th, however, her symptoms had escalated and led to a hospital visit and a diagnosis of ataxia for balance issues. Despite being discharged with a prescription for home physical therapy, her condition continued to worsen. By June 26, she developed fear responses and hallucinations, and our family knew that something was seriously wrong. Over her objections that she was “fine”, we insisted on an emergency trip to the hospital where a team of neurologists began a series of tests. It was only after testing for bacterial and viral infections, MRIs, CATs and EEGs, that the team of neurologists established a preliminary diagnosis of autoimmune encephalitis (AE). This condition involves brain antibodies attacking specific brain proteins, leading to a range of neurological and psychiatric symptoms. So, with that working diagnosis, treatment began with steroids and immunotherapy. Nothing seemed to be working! As she became unresponsive, our hopes for a cure waned. One of the neurologists in the team then mentioned the remote possibility of CJD, a disease that was totally unfamiliar to the family, and because we learned that it was incurable, we went into denial. How could it be that she might not come home to us? But after it was evident that the AE protocol was not producing results, we decided to transfer her to a tertiary hospital known for its exemplary treatment of neurological diseases. There, a plasma transfer, a last resort, failed. Our greatest fears were confirmed when spinal fluid results from the National Prion Disease Surveillance Center (NPDPS) in Ohio revealed she had sporadic CJD. We were then faced with the painful reality that nothing could save her. After one week in hospice care, our beloved Kristine left us the morning of August 4, 2025. She is survived by her twin sons, daughter-in-law, mother, her sister and family, and fiancé, as well as many cousins and dear friends. We all find comfort in the memories that will live forever in our hearts.

Our Mission

Ongoing research into potential treatments and diagnostic methods is world-wide, with help from the CJD Foundation family grants, but there is no known cure or effective treatment for this insidious disease. As she would’ve wanted, we donated her brain to the National Prion Disease Surveillance Center (NPDPS} in Ohio for further research. Our family’s mission is to support this research through a family grant in Kristine’s name, and to bring awareness to this rare disease which seems to be increasing annually. We are confident that, with the generosity of others, we can get closer to earlier diagnosis, effective treatment, and an eventual cure. Every dollar that is donated is tax deductible and will go a long way to support research and the families who are suffering from this horrendous disease