It has been nearly two years since Cruetzfeld-Jakob Disease (CJD) cruelly stole my husband Chuck from me. Within a short seven days of his diagnosis, I had to bid a heartbreaking farewell after his rapid decline over 57 days. This terrible reality highlights the swift and devastating progression of this disease.
CJD is a rare and fatal brain disorder affecting approximately 500 people annually in the US. It can arise spontaneously, be inherited, or spread through contact with infected tissue via procedures or contaminated meat. Caused by misfolded Prion Proteins in the brain, CJD leads to dementia and ultimately death, with symptoms like personality changes, memory loss, and coordination problems developing rapidly over months. Sadly, there is currently no cure for CJD, highlighting the urgent need for greater awareness, education, and funding to support research towards effective treatments and a cure.
Chuck passed away from the hereditary form of CJD, a particularly rare variant affecting around 15% of those afflicted by this devastating illness. His mother had also tragically died from CJD in 2004.
Because CJD is so rare, there remains a profound lack of awareness about this disease within the medical community. Frequently, patients are misdiagnosed with conditions sharing similar symptoms to CJD but having available treatments. Consequently, our loved ones find themselves receiving treatments for conditions they do not have, offering a glimmer of false hope for recovery. This heartbreaking scenario unfolded for Chuck during his first hospitalization. While we acknowledged that CJD was a possibility, the initial medical opinions we received confidently assured us with 99% certainty that he did not have CJD while indicating the four MRIs conducted during his hospitalization showed no signs of CJD progression. The harsh reality emerged 15 days later at the Mayo Clinic in Jacksonville when he was diagnosed with CJD. Tragically, just seven days later, on Saturday, November 5, 2022, Chuck passed away from CJD.
Our story fuels my personal commitment to collaborate with the CJD Foundation in heightening awareness, providing education, and raising funds for two critical purposes:
1. To prevent other families from enduring misdiagnosis and unnecessary treatments like we encountered at the initial hospital.
2. To secure funding for the dedicated researchers striving to discover treatments and a cure by equipping them with the vital resources they need to continue their invaluable work.
Chuck exemplified kindness, compassion, intelligence, and courage, serving as a Senior Chief Petty Officer and Intelligence Specialist in the US Navy for 28 years, earning recognition with the Bronze Medal in 2006. He also spent over 30 years in civilian professions, including nine-years at JPMorgan Chase. Regardless of the role he played in either his military or civilian professions, Chuck excelled in mentoring his team, encouraging innovation, continuous learning, and career advancement.
Beyond his professional achievements, Chuck was my best friend and closest companion. Our history spanned nearly 24-years, and we were lucky enough to spend nine years together, including six years of marriage. Together, we forged an unbreakable partnership, sharing in each other's pursuits and providing unwavering support and love.
Chuck playfully earned the nickname "Queso" after a casual conversation linking his last name, Romano, to the Spanish word for cheese. This connection led to Chuck being affectionately called Queso, and when we got married, Team Queso was established. While Chuck initially took on the role of team coach, I now carry on that responsibility, guiding our team's path.
Chuck taught me the essential lessons in leadership—integrity, resilience, courage, and, above all, love. These virtues are the pillars in which Team Queso was built upon and continue to demonstrate, ensuring triumphant victory in my quest for a cure for CJD.
Today, I seek your support, and invite you to join Team Queso. With your contribution, we can continue to exemplify these qualities, striving not just to succeed but to flourish in our results. Together, we can make a meaningful impact by championing integrity, resilience, courage, and love in our quest to find a cure for CJD.
Will you stand with me in my quest for triumph over CJD?
Ilona Zippilli