The battle against Amyotrophic Lateral Sclerosis (ALS) has gained a strong supporter with the creation of the Jennifer Prest Bulbar ALS Fund. This fund of $100,000 donated by Jennifer Prest, who sadly passed away on April 17, aims to revolutionize the diagnosis and management of bulbar onset ALS, a particularly challenging form of the disease.
Bulbar onset ALS accounts for approximately 30% of ALS cases and is characterized by symptoms that can be poorly recognized in the early stages of the disease. Bulbar onset ALS is especially challenging as it affects how an individual talks and swallows. The research funded by the Jennifer Prest Bulbar ALS Fund aims to shed light on the lengthy and frustrating diagnostic journey faced by many individuals with bulbar onset ALS. Moreover, it seeks to develop diagnostic tools that can identify distinctive speech features associated with bulbar ALS, potentially facilitating earlier detection by non-specialized frontline clinicians.
"The bulbar version of ALS robs a person of their humanity. The ability to eat and speak are basic to being able to relate to others. These are the first functions to be affected by this disease, causing the patient, or victim, to withdraw from everyday conversation and mealtimes. Yet the brain continues to process thoughts and responses,” said Jennifer Prest, in early 2024.
“This is why I want these funds to be used to research a way to detect the bulbar strain early so future victims do not have to go through so much uncertainty for as long as I did.”
The Jennifer Prest Bulbar ALS Fund will support Dr. Gordon Jewett and Dr. Yana Yunusova, ALS researchers at the University of Calgary and University of Toronto, who are collaborating to address some of the many unmet needs in bulbar ALS. Their work will focus on understanding the lengthy and frustrating diagnostic journey faced by many people with bulbar onset ALS.
Dr. Jewett, an assistant professor at the University of Calgary and a leading name in neuromuscular neurology and clinical research, expressed his optimism about the impact of their work, stating, "the research projects supported by the Jennifer Prest Bulbar ALS Fund, aim to improve the lives of people living with bulbar ALS. We often meet people who have a frustrating journey to diagnosis and appropriate care, as Jennifer did, and we hope her investment in research will prevent others from going through that experience."
Dr. Yunusova, a professor at the University of Toronto and renowned expert in speech production and neurologic diseases, emphasized the significance of the contribution, saying, "We are grateful to Jennifer and her husband who recognize the importance of this work; we expect that this contribution will speed the development of novel tools for bulbar assessment and result in better diagnostics and care for those who are affected by bulbar ALS."
Dr. Jewett's research focuses on artificial intelligence models and digital outcome measures as biomarkers in ALS and other neuromuscular diseases, while Dr. Yunusova's expertise lies in understanding the effects of neurologic disease on speech production. Together, their collaborative efforts hold the promise of transforming the landscape of bulbar ALS diagnosis and care.
Jennifer Prest pursued an adventurous life, working internationally before settling in Canada and later pursuing education at the University of Calgary. Jennifer had a successful career in education, particularly in computer literacy, and received recognition for her contributions to business education. She married Martin Stocker in 1987 and enjoyed traveling extensively during their retirement. She leaves behind a legacy of friendship and a life well lived.
The Jennifer Prest Bulbar ALS Fund is committed to supporting initiatives that advance understanding, diagnosis, and treatment of bulbar ALS, in memory of Jennifer Prest, who battled the disease with courage and determination. The ALS Society of Alberta and the Alberta ALS Research Community are truly touched by her incredible determination to make lives better for those affected by ALS.