A story from Andrew Swigart
The lives of both my sister and mother were irreparably altered by neurological disorders and the mysterious factors that cause them. My sister is a childhood cancer survivor. She survived an ependymoma tumor—a malignant growth in the central nervous system. Those of you with a similar experience know that childhood cancer traumatizes the patient and her family in different ways. I was in second grade when my sister was diagnosed so her illness impacted a majority of my childhood. Like many young siblings of those who have had severe childhood illnesses, I grappled with a lot of complex feelings. It was difficult for me to wrap my mind around the attention and centrality of my sister’s situation. My parents had to make life or death decisions for her and at the same time provide some normalcy for me. It was a lot for us all to handle.
My sister suffered, struggled, and has overcome many of the ramifications of her treatment with a graceful strength, a subtle toughness and iron grit. I am very pleased to say that her cancer has been in remission for over 25 years.
Years later, another neurological disorder called Creutzfeldt–Jakob Disease (CJD) struck my family. CJD is like an accelerated version of Alzheimer’s disease. Slowly, malformed proteins clogged my mother’s neural pathways affecting her higher reasoning skills, memory, motor functions, and ultimately her body’s most basic functions. We lost small parts of her on a daily basis and her passing was a slow process to watch: physically painless but emotionally wrenching. My family’s experience has provided me with a passion to support the advancement of basic scientific research and the perspective to appreciate the direct correlation between that research and hope. The BRF seed grants push forward the frontiers of medical science. The answers derived from the research the Foundation funds will benefit us all, and provide other families some much-needed hope.
I was profoundly shaped by both illnesses; they are inseparable from my life. I am grateful for the BRF for providing me the opportunity to help support the advancement of research that will one day prevent other families from experiencing the trauma that affected mine.
