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.

A gold trophy with a laurel wreath around it.
By Dan Lewis Foundation April 2, 2025
For the third consecutive year, the Dan Lewis Foundation for Brain Regeneration is proud to announce the DLF Prize competition. The 2025 DLF Prize, a $20,000 award, will recognize an outstanding early career scientist (2 to 5 years post-doc) conducting innovative research in neuroscience, pharmacology, or biotechnology. This prestigious prize honors researchers whose work aligns with the DLF mission to drive breakthroughs in neural regeneration and repair. The current research priorities of the DLF are: Pharmacological Reactivation of Neural Repair: Research into pharmacological methods of reactivating or augmenting synaptogenesis, neurogenesis or axonal repair. Cell-Based Cortical Repair: Investigating the potential of derived cortical neurons to restore function in damaged cortical regions. Transcriptomics of Neural Recovery: Characterizing transcriptomic profiles of cortical neurons in the recovery phase following brain injury to identify pathways that drive repair. Molecular Inhibitor Targeting: Advancing anti-sense oligonucleotides (ASO’s) or small-molecule therapeutics designed to downregulate inhibitors of neural regeneration in the cortex or spinal cord. Application for the 2025 DLF Prize can be made by going to our website— danlewisfoundation.org —and clicking on the Tab “ 2025 DLF Prize ”. This will bring you into the application portal. The application portal opened in March, 2025 and will remain open through May 31st. Once in the portal, you will find complete information about the DLF prize, eligibility requirements, and an application form which can be filled in and submitted online. The winner of the 2023 DLF Prize, Dr. Roy Maimon, continues his research indicating that downregulation of PTBP1, an RNA-binding protein, can convert glial cells into neurons in the adult brain (Maimon et al. 2024) .* Dr. Maimon, currently a post-doc at the University of California, San Diego is currently interviewing for a faculty position at several prominent neuroscience departments. The winner of the 2024 DLF Prize, Dr. William Zeiger is a physician-scientist in the Department of Neurology, Movement Disorders Division, at UCLA. Dr. Zeiger has expertise in interrogating neural circuits using a classic “lesional neurology” approach. He states, “Our lab remains focused on understanding how neural circuits become dysfunctional after lesions to the cortex and on investigating novel circuit-based approaches to reactivate and restore damaged cortex”. * Maimon, Roy, Carlos Chillon-Marinas, Sonia Vazquez-Sanchez, Colin Kern, Kresna Jenie, Kseniya Malukhina, Stephen Moore, et al. 2024. “Re-Activation of Neurogenic Niches in Aging Brain.” BioRxiv. https://doi.org/10.1101/2024.01.27.575940.
By Dan Lewis Foundation April 2, 2025
Alan was injured in 2021, at age 42. An art teacher in Lakewood, Colorado, Alan was riding his bicycle after school and was crossing at an intersection when a truck turned into the crosswalk area and hit him. Alan reports no memory of the event but has been told this is what happened. Alan says “My frontal lobe took the brunt of the impact, particularly the left frontal lobe”. Alan had a 2 ½ week stay at a nearby hospital where he, “re-learned to talk, to walk, and drink”-- although again he reports no memory of his stay there. Alan was then transferred to Craig Rehabilitation Hospital, in Englewood, Colorado. Alan says, “The only reason I knew I was at Craig is that I rolled over in bed and saw “Welcome to Craig” on the dry erase board.” During this stage of recovering, Alan repeatedly denied that he had been in an accident. Twice he tried to leave Craig on his own accord despite his wife’s and his therapists’ assurances that it was important for him to stay to recuperate from his injuries. Alan’s wife was 8 months pregnant at the time of his accident and gave birth to their son while Alan was an inpatient at Craig. Alan’s wife brought his newborn son to visit him days after the birth and Alan held him while sitting in his wheelchair, but Alan wistfully reports this is another thing he can’t remember. Alan reports that he still has significant difficulties with memory. Alan has also experienced several other neuropsychological difficulties. He states that for months after his injury, he could not experience emotion. “I could not laugh, I couldn’t cry.” Even after three years, his emotional experience is constricted. However, an emotion that is sometimes elevated is irritation and anger. Sometimes, dealing with people can be difficult because he may have temper flare-ups with little reason. This is something that Alan regrets and he is working hard with his neuropsychologist to improve the regulation of his emotions. Alan also has difficulty with organization, motivation, and distractibility. Earlier in his recovery, he had trouble sequencing and had difficulty carrying out personal and household routines. Alan has benefited greatly from therapy and his own hard work to make improvements in these areas. A chief reason that Alan works so hard in his recovery is so that he can be a good father to his son who is now almost 3 years old. He recognizes that it is important not to get frustrated when it seems that he can’t provide what his son wants or needs at a given moment. “I’m trying to raise my son the best I can…he’s at such a pivotal time in his life.” Alan’s financial situation was helped for a time by Social Security Disability Insurance payments but these payments ended. He is trying to get SSDI reinstated but the process of doing so is confusing and is taking a lot of time. Alan returned to work about 11 months ago at a liquor store (after about 2 years of not being able to work), the same store where he previously worked part time while teaching. He works in the wine department. “I sell wine and make recommendations.” When asked for advice to other brain injury survivors, Alan’s words were: “No matter how confused or upset you are or how frustrated you get, keep pressing on and moving forward because there is light at the end of the tunnel even though it may seem long. Keep moving forward and don’t give up no matter what anyone says to you”. Alan added that supports for individuals with brain injury are very important. He has found support groups, retreats, and seminars/events where brain injury survivors can share their experience to be very helpful. The volunteer work he does at Craig Hospital has been valuable for him. Alan is an inspiring individual. Despite having scarce memory of his accident and some confusion about the functional losses he has experienced, Alan has worked hard to make his recovery as complete as possible. He continues to work hard to progress and to express gratitude for those who have assisted him along the way.
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