Chase’s Story
Dan Lewis Foundation | Winter 2024

Chase’s life turned unexpectedly when he was just six years old. As a loving grandmother, I witnessed the remarkable strength and resilience of my grandson as he faced a traumatic brain injury caused by F.I.R.E.S. (Febrile Infection-Related Epilepsy Syndrome). This harrowing journey has not only transformed Chase’s life but has also highlighted the incredible power of hope and the potential of unconventional treatments.


It all began when Chase had just started first grade. Three weeks into the school year, he developed strep throat and was prescribed amoxicillin. However, Chase’s condition worsened, and by day five of treatment, he began experiencing continuous seizures. In a desperate race against time, he was airlifted from a local emergency department to the Pediatric Intensive Care Unit at the Children’s Hospital of Philadelphia (CHOP).


Chase’s life hung in the balance as he was put on life support, administered high doses of antiseizure medications, underwent medically induced hypothermia, and received a ketogenic diet through an IV. The odds were stacked against him, with doctors giving him only a 30% chance of survival, and the prognosis for F.I.R.E.S. was grim. My daughter, a single parent at the time, and I scoured the internet for any glimmer of hope, any treatment that could offer a lifeline to our precious Chase.

After weeks of relentless research, we stumbled upon a small mention of a clinical trial involving cannabis oil for children with intractable epilepsy, specifically Dravet and Lennox-Gastaut syndromes. We approached CHOP with this information and were granted permission for the “compassionate use program” of Epidiolex, a new medication developed by GW Pharmaceuticals undergoing clinical trials. A compassionate use program, also known as expanded access, provides access to investigational drugs, biologics, and medical devices. These programs are used to treat patients with serious or lifethreatening diseases or conditions for which there are no satisfactory treatment options. The results were nothing short of miraculous; Chase’s seizures began to decrease almost immediately.

With the help of Epidiolex, Chase’s seizures eventually stopped completely. However, the journey was far from over. He was transferred to CHOP’s rehabilitation center, where he had to relearn basic functions, such as swallowing, chewing, standing, sitting, toileting, and speaking. As a former registered nurse, I had witnessed countless medical challenges, but this experience was one of the most emotionally taxing. I had entered the ordeal believing that a top-tier children’s hospital would provide all the answers, but the reality was far more complex.


Today, Chase is 15 years old, a testament to the power of perseverance and medical innovation. While he continues to require a ketogenic diet, several antiseizure medications, and a device implanted in his chest to interrupt breakthrough seizures, Epidiolex remains a vital part of his treatment regimen. The traumatic brain injury he sustained has left him with receptive and expressive aphasia, necessitating his use of a communication board for interaction. He is enrolled in high school special education, defying the odds stacked against him since that fateful day when F.I.R.E.S. left a lasting mark on his life.

Chase’s journey demonstrates the unyielding spirit of children and the power of families who refuse to give up in the face of adversity. It underscores the importance of medical research and compassionate use of emerging treatments and inspires all those facing their battles with rare life-threatening and debilitating conditions. Chase’s story reminds us that even in the darkest times, there is always a glimmer of hope, and with determination, love, and medical breakthroughs we can overcome the greatest challenges.

By Dan Lewis Foundation | Spring 2024 11 Apr, 2024
Graham Dempsey, Ph.D., is a founder and Chief Scientific Officer (CSO) at Quiver Bioscience, a Cambridge, Massachusetts-based biotechnology company focused on the development of medicines for disorders of the nervous system. Dr. Dempsey and his team are working to develop treatments for some of the most challenging unsolved medical issues patients and their families face. Using advanced technologies in human stem cell biology, optogenetics, machine learning, and drug screening, progress is being made to develop medicines that will one-day treat conditions that have been largely untreatable. As the lead scientist for Quiver, formerly Q-State Biosciences, Dr. Dempsey enjoys working with world-class teams to invent, develop, and apply cutting-edge technologies to solve the most difficult challenges in biopharma for the betterment of patients. Dr. Dempsey’s inspiration to dedicate his professional life to science and medicine started at the early age of seven with the tragic loss of his father to an aggressive form of cancer, an experience that has deeply motivated him to this day. He completed his undergraduate studies at the University of Pennsylvania and his doctorate at Harvard University. As a graduate student in the biophysics program at Harvard Medical School, he co-developed ‘Stochastic Optical Reconstruction Microscopy’ or STORM , a light microscope with the ability to resolve nanometer (billionth of a meter, e.g. a hair is 100,000 nanometers thick) scale details of biological materials, an achievement that had been thought to be impossible for over a century. STORM has enabled what researchers call ‘super-resolution imaging’ for visualizing the intricate details of life’s most fundamental unit, the cell. Understanding the inner workings of a cell provides a path to a deeper understanding of the ways in which life is constructed and diseases can manifest. The technology was commercialized by Nikon Instruments for researchers worldwide. Dr. Dempsey left academic science to join Q-State Biosciences as the first hired employee with the goal of bringing advanced technologies developed at Harvard to the study of the brain. The brain, arguably the most complex structure in the known universe, works through electrical communication between brain cells or neurons. This communication is disrupted in all brain disorders but has been near impossible to study for the purposes of effectively developing medicines. Dr. Dempsey and his team over the course of ten years built a technology system that creates human brain models from patient stem cells (i.e. a ‘disease-in-a-dish’) and converts electrical activity of those brain cells into light signals that can be detected with ultra-sensitive microscopes. The resulting signals are analyzed using machine learning to find the patterns of how electrical activity is altered in disease, which can be used to find medicines that correct those changes. The team at Quiver is deploying this technology to take on previously untreatable brain conditions, including rare genetic diseases, such as certain seizure and neurodevelopmental disorders, to common conditions, such as chronic pain and Alzheimer’s disease. Dr. Dempsey’s passion outside of science starts with his family, his wife (and high school sweetheart) and three young daughters, be it traveling the globe to experience new cultures (or simply stare at the ocean), cooking elaborate meals on a Saturday evening, night-time reading of novels to his daughters, or attending live music around Boston. As a native of NJ, he celebrates his roots with visits to family near the Jersey Shore and, whenever possible, attendance at Springsteen concerts and Giants games. Dr. Dempsey is an avid student of history’s great entrepreneurs, spending the sparse remaining minutes of the day reading biographies and listening to podcasts, looking to extract every bit of learning towards taking on the challenges of building a great business while staying true to his family, his Quiver teammates, and his professional mission.
By Dan Lewis Foundation | Spring 2024 11 Apr, 2024
Sheryl Suzanne Nibbs, a legal secretary in a top law firm, started the process of becoming a paralegal as she approached her 40th birthday. She was fancy in her appearance, always making sure her hair, nails, and clothing were in order, a well-kept person, an avid traveler, and her mother’s best friend.
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